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.

Christmas in Xeloda Land

I'm writing this retrospectively, since I was absent through so much of my treatment. Christmas was grim: No tree, no decorating of any kind. I don't even think I had the energy to buy gifts. I bought something early in my diagnosis for one of my office cohorts. I don't think Hubby got anything. He didn't mind. He could see how it was for me.

I felt wretched for the first 5 days after chemo. About the time I started to feel better on some level, it would be time to go back and have more poison pumped into me. I also had to take Xeloda at home as an extra chemo bonus. I think it was the Xeloda that caused the mouth sores that continued throughout the time I was taking it. I also had sores on my hands, on the skin in between my thumb and forefinger. On both hands.

I hurt all over. I felt like I weighed 300 pounds and it was 300 pounds of unassailable pain. I couldn't really pinpoint exactly where I hurt (except for the mouth and hand sores) or explain the kind of pain I had. It was definitely bearable, but bearing it took an enormous toll in my energy, concentration and memory. I did, in fact, gain about 20 pounds from the steroids. They were supposed to help with the nausea sometimes experienced by chemo patients. I never had any, so I guess it worked.

There was a me somewhere in that 300 pounds of pain, but I was hard to find most of the time. When I could find myself, it was always in the context of being a tiny speck of personhood in an enormous body. The speck was dedicated to holding on.

I held on. And on and on. Just when I thought I was almost through with chemo, I learned there was another 3 months in store for me. It was demoralizing. I had no choice. So I kept on noting what it felt like to be so sick and trying not to have any feelings or thoughts about that.

Sometimes all you can do is hold on and it takes everything you've got to do it.

Magic

I've been silent a while because of the overwhelming effects of my chemotherapy. Every new round brings mouth blisters and blisters on my hands. I feel like I'm on auto pilot most of the time, just trying to endure the pain and not think too much about the future. I'm getting a lot of practice in living in this very moment. Unfortunately, the more in the moment I am, the more parts of me get shut down. I don't really have the concentration to read or write. Sometimes it feels like there's only a small part of myself that isn't in pain. I continue to try to live in that small space, profoundly aware of the pain, but walled off from the full impact. I have no choice but to insulate myself to whatever extent I'm capable. Luckily, I got really good at this when I was a kid.

This is where the post traumatic stress disorder comes in. Admittedly, ptsd adds a whole layer of complication to life and it diminishes my range of feeling. Those are just a couple of ways that my survival mechanism that saved me keeps me chained to the past. However, the ghost of christmas past has a part to play in helping me to endure the present. I've got an enviable ability to place issues beyond the reach of my mundane thought processes. I imagine the difficulty (or fear, worry or pain) in a box. I imagine opening a door in my mind and placing the box inside of it. I bar and then lock the doors. While I know that the gift box will have to be opened and dealt with at some point, it's safely tucked away so that I can resume my life.

Everyone in my life tells me what an inspiration I am. They're inspired by my ability to find and celebrate humor. They're inspired by my steely determination to get out of bed every day and function at work. They don't know the secret. They don't know that I created a room in my head long ago and that pain gets ushered through that door. Pain and I have an understanding. I'll be back to deal with it as soon as I can. Pain is patient and settles in for the wait.

I've never doubted that I managed to grab some magic from my terrible past. I've used it in far less difficult circumstances than these. When things get too hard, I search for the correct incantation. At those times, I'm grateful for the terror and pain of my childhood.

Thanksgiving

There was no Thanksgiving celebration at my house. I had to be in Houston the next day for chemotherapy. I didn't really care by that time; I'm too far gone the black hole of chemo.

The weird thing about chemo is that I started having an aversion, not to foods consumed the day of or after my treatment, but the day before. Even when I'm not suffering from sores in my mouth and down my throat, I no longer eat barbecue, no cheese and sometimes Olive Garden commercials are a bit much.

My hotel is right across the street from an Olive Garden and a Mexican restaurant. God only knows how the Mexican food has survived the onslaught of chemo.. I live in Texas; I'd have to move to another state if I'd developed some kind of distaste for it. I gave up Starbucks pretty early in the game after having purchased a piece of cinnamon coffee cake the day before one of my treatments. I may never eat coffee cake again. As a matter of fact, I can't even stand to smell it.

I never ever get accustomed to the coldness of the room we have to sit in before they call me back to my little room with its hospital bed, the television and a chair for my mom. Sometimes I spend an hour or ninety minutes in that frigid tundra of a waiting room before they usher me back to where the real pain begins. It always hurts to attach the i.v. to the port in my chest. After that initial pain, everything is fine except for a cold feeling as the drugs flood into my body. On some level below normal consciousness, my body knows what's happening; industrial strength poison is flowing through my veins and internal organs. That knowledge is too frightening for me to allow into my thoughts.. It's really amazing how many carcinogenic chemicals are introduced into your system in order to diagnose, then treat, cancer.

Getting all the chemicals into my body generally takes 45 minutes to an hour. After treatment is over, I sometimes have difficulty making it out of the hospital. The drugs immediately exhaust me and bone pain sets in right away, too. I get out of breath; this person who used to be in such great condition can barely make it down the hallway to get to the escalator that will take me to the valet parking area.

Usually we have breakfast and many appointments leading up to the chemo treatment. Sometimes a full 12 hours elapse before I have anything else to eat. I can't eat at the hospital because the two cafeterias there (really excellent, as far as hospitals go) are so connected to pain that I can't force myself to even pass by them after my treatment is over. The smell nauseates me. Furthermore, they rarely leave me enough time between appointments on chemo days for me to even make it to the cafeteria if I could bring myself to eat something there.

After it's all over (usually around 9:00 p.m.), my mom sometimes has to go pick food up from time to time when I just can't get up and out the hotel door to get something. The restaurant at the hotel is just as noxious as the hospital cafeteria, for exactly the same reason.

The next morning, I don't generally feel nauseated, but I have to eat really bland foods. Comfort foods, except there's really no comfort to be had. I don't generally feel like eating at any time, whether or not it's a chemo day.

I suppose we could have celebrated the holiday in advance, but it would have been a lot of work with very little payoff for me. Hubby doesn't seem to need the ritual of celebration. So there was no turkey at my house for Thanksgiving; just a trip to Houston. Not that I missed it.

Chemotherapy

Chemotherapy. I spent a week with blisters in my mouth, unable to talk and barely able to eat. My hair is now falling out. I've lost most of my pubic hair. Of course, on the up side, I haven't had to shave anything. Legs and underarms are nude. I noticed this morning that my skin has started to peel.

My next round is on November 22. I've already started to dread it. I'm going to buck up about this, but it's just taking a little longer right now. I plan to have a serious discussion with my medical oncologist about the mouth issue. I can be very determined and vocal when situations warrant. I'd say this warrants it.

People constantly tell me that I'm an inspiration. They're easily inspired. About the best that could be said about me is that I don't mope or take to my bed. I frequently find things funny and invite others to laugh with me. Is this inspirational? Maybe that's just because I choose to search for personal meaning in this current travail.

I think that it's imperative, when one has lived such a difficult life as mine, to try to find some meaning in it. If I believed that all of my suffering has been random and meaningless, I'm not sure I'd wish to continue. Meaning is a tricky thing, though. Sometimes it can take years to assimilate terrible circumstances, wade through the pain and actually find reasons why all that suffering wasn't pointless. There are definitely some things I'm still trying to puzzle out. I'm patient, though. I have time.

I establish some meaning for myself. That is not necessarily the meaning the universe has assigned to it. Nonetheless, there are lessons to be learned if one is capable of waiting patiently for them to become manifest. At the end of all suffering, now and in the past, is a way to become more fully human. For as much as I have suffered, I'm more able to see the suffering of others. I'm more able to find compassion for others.

For a month or so, I've been working toward releasing all of the anger, hatred and resentment that I carry around with me. Some of it is easy to find. I could probably name five or six people I'm enraged with just off the top of my head. There is a lot that I keep hidden from myself. Rage has never been an acceptable emotion for me. My dad pretty much had that market cornered. Unfortunately, I will have to dredge it up in order to let it go. That's quite a task.

Today my lesson is that I am more than the sum of my parts. I am more than my breast, my hair or my skin. It's much easier than learning all of the places in my being where I've stashed some rage just so that I could function effectively in the world. That's the other part of being an inspiration, I guess. Having the heart to keep going, come what may.

Birthday?

Hey, I don't need no stinking birthday celebration. Chemo. Bring on more chemo.

Mastectomy Aftermath, Part 2

Don't walk in front of me, I may not follow.
Don't walk behind me, I may not lead.
Just walk beside me and be my friend." ~ Albert Camus

I finally had to look, goddamn it. I accidentally ripped out the remaining drainage tube after taking a shower. I was fine with that, really sick of having the reservoir attached to my hip. My mother came over and took a look at everything to reassure herself that I didn't need to make a trip to some medical facility. Then I was left to deal with it myself. In order to clean the wounds with alcohol, I have to see the wounds. Apparently I've decided not to have any feelings about it. I try to avoid catching glimpses of it when I'm psychologically unprepared. So far, so good.

On Thursday, I have a follow up with my beloved surgeon. It's not until 6:00 p.m., though, so I anticipate having to sit in the stupid little exam room with a huge patient gown on until around 8:30. That's just the way he is.

I don't quite get the gown thing. Everytime someone hands me one at the hospital, it's enormous. Do they only expect to have patients 200 pounds and larger? It never fails that I end up having to try to find a bathroom while hanging onto the tent, tied in the front. It would be funny if it weren't quite so chilly.

Things are going pretty well. I've been dedicated to trying to regain my range of motion in my left arm. I was so looking forward to getting my yoga practice up and running, but I'm lucky if I can just lift my arm straight up at a 90 degree angle. I had great flexibility and strength before all of this started and I can't imagine what it must be like to try to rehab if you're not in shape to begin with.

Today is the eight year anniversary of my father's suicide. Saturday was the first anniversary of my best friend's death. I'm right on the razor's edge emotionally these days. I actually started crying about an Elvis song playing on the radio. I don't even much like Elvis.

I dreamed about my father last night, but I don't recall what happened. I think about Becky virtually every day. I can't believe she's not here even now. Sometimes I'm still angry that she left so soon. I miss her so much.

The weeks prior to surgery, when I was afraid, I'd imagine all of the people who loved me standing around me, with their hands on my shoulder, my arm, my hand. They were comforting me, reminding me that there's no reason for fear. Either way. Live or die. No reason for fear. When I was a little girl, I would swing as high as I possibly could, beyond fear, and at the apogee, let go. For just a few moments, nothing could hold me to the earth. Not my parents and their madness, not my own misery, not even my rage. Letting go is still exactly the same. These days I'm flying free, no holding on just like then. I count on the universe to keep me aloft. I count on gravity to hold me close until it's time to go. I count on the people I've loved, who've gone on without me, to remind me of who I truly am.

America held hostage day 1388
Bushism of the day:
"But we will bring the weapons and, of course—we will bring the information forward on the weapons when they find them. And that will end up—end all this speculation. I understand there has been a lot of speculation over in Great Britain, we've got a little bit of it here, about whether or not the—whether or not the actions were based upon valid information. We can debate that all day long, until the truth shows up."
—Bush, unwavering in his certainty that one way or another WMDs will appear in Iraq
Source: The White House, "President Bush, Prime Minister Blair Discuss War on Terrorism," July 17, 2003

I live for the Karl Rove, Scooter Libby thing these days.

Website of the day: Health Journeys: Resources for Mind, Body and Spirit
http://www.healthjourneys.com/

Mastectomy Aftermath, Part 1

If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.... " ~ Marcus Aurelius

They removed my left breast about two weeks ago now. I haven't looked yet. I may never look. I have family members who are very sweet about helping me deal with the wound so I don't have to get too personally involved. It's working out great for me; I may never have to leave the safety of my profound denial. Of course pain doesn't give me that option. I can't just delegate it to someone else. Pain is the least of my problems, though.

Every painful event is measured by what I've come to call "The Needles In the Breast Scale." I have yet to come across anything that crosses that threshold. I spent the day after surgery throwing up. Even soft drinks refused to take up residence in my stomach. Meanwhile, nurses kept coming and going, telling me that I needed to drink water and, noting that I was throwing up, about to throw up or having just done so, would wander back out of my room on the pretext of getting someone or something to help me. I wouldn't see them again for another hour or so, at which time the whole process would start all over again. My doctor's assistant told me that it was just a reaction to the anesthesia and I should be better in about 24 hours. I nodded my head, but I was skeptical. She was right. At almost exactly 24 hours, the nausea completely disappeared and I started eating solid food.

I was really just out of it for about 8 hours after the surgery. After I got into my room from the recovery room, they brought some chicken consomme for my enjoyment. I started eating, but I was still under the influence of the morphine drip. I would get a spoonful of soup, lift it to my mouth and fall asleep before it actually got there. I ended up wearing more chicken soup than I ingested.

I'm at work today for the second day in a row. I'm trying to keep my fatigue level under control, so I'm only staying a couple of hours at a time. I woke up with some pain today, so I was already a little tired before I got here. All of this is by way of saying that , though there is much more to say, I don't quite have the wherewithal to say it. There will be more when I'm more able.

Things I don't generally like to admit

"Change alone is unchanging." ~ Heraclitus

I'm feeling a little spaced out today. I missed taking one of my antidepressants for a couople of days and it makes me feel a little like I'm having an acid flashback. Not in a good way.

I'm still living in denial about what's going to happen next week. I spent a lot of time trying to get my mind right about losing a breast and I still haven't come to terms with it. I'll just have to deal with it when the time comes.

Have I talked about how ironic it is that this is happening to me? I was abused over a period of years when I was a very young child. I had a father who absolutely could not keep his dick in his pants. I have this rock solid idea floating just below the surface of consciousness that women are valuable to men to the extent that they're physically attractive. See, I don't even like to admit that to myself. My intellect rejects that idea. I am, after all, a feminist.

My breasts have been one of my best features since I was a teenager. Now if it were butt cancer, that might be different. I'm not crazy about my butt and I never have been. Mainly because I don't really have one. Well, I have one now because I work out like crazy and I have well developed gluteous muscles. I've never herd of gluteous cancer before, so I'm not sure that's even in the range of options.

No one ever thought I was very pretty until I was about 18. Lots of people thought I was beautiful after that age and up until at least my early 40's. Some people still do, but that's just because they love me, I think. It's been a hard thing to give up, even though I'm very aware of the many other aspects of myself that are interesting. Nonetheless, it's a hard thing to come to terms with.

I anticipate being a much different person at this time next year. I don't recall when I started to be uneasy with the concept of change, but I'm definitely a little anxious about it now. I suppose that's why I'm so fond of the Nina Simone song, "Everything Changes." It's a heartbreakingly beautiful song. Everything does indeed change, all of the time.

I think there are definitely parts of one's personality that become solidified and resistant to change pretty early on. I'll always be an introvert. I'll always be intellectually curious. I'm sure there are other qualities that I came equipped with at birth that just are what they are. There is a fair amount of damage that was inflicted on me at a very early age that also seems to be immutable.

The ways that those qualities are manifested in my behavior have probably changed over time. Or not. Scientists can't tease out which is weightier--nature or nurture. I'm certainly not going to be able to figure it out. But I digress.

Right now, I think the challenge will be to open to whatever lessons are available to me throughout the coming year. I hope I'm able to recognize them when they become available to me and, having recognized them, embrace them. It's a tall order, I know. May I keep my heart and mind open. It's about the best I could wish for.

America held hostage day 1362
Bushism of the day:
# "First, let me make it very clear, poor people aren't necessarily killers. Just because you happen to be not rich doesn't mean you're willing to kill."
—Bush, speaking about terrorism and poverty
Source: Public Papers of the Presidents, "The President's News Conference With President Macapagal-Arroyo of the Philippines," May 26, 2003

Website of the day; Sacred Text Archive
http://www.sacred-texts.com/index.htm

New Surgery Date

Hurricane Rita postponed the surgery, but today they rescheduled me for October 5. I still have to get there a day early so they can do the CT scan and anesthesiology thing. I asked the physician's assistant, Lori, if we couldn't just postpone it a bit longer until the plastic surgery guy is available. She had mentioned he was booked through November when we first discussed this. Now I guess he's busy through January.

I'm incredibly bummed out. I finally just gave up the whole idea of getting my mind right about this. It isn't going to happen. I'll just have to come to terms with it after the surgery. Or maybe I'll never come to terms with it. I just have to get through it, one way or the other.

Hurricane

The hurricane is threatening to ruin the upcoming trip to the hospital. It would be fine with me to postpone the mastectomy a bit longer, but the nodule problem is making me completely nutty. I'm still planning on going, but I understand that they're evacuating Houston, so that doesn't bode well. I'm unconvinced that the weather forecasters know what they're talking about. Hurricanes are unpredictable creatures who like to veer off suddenly into unanticipated directions.

Of course, on the up side, if I still needed a reservation in Houston, I'd probably be able to get one now. I don't need a reservation, though.

Farewell sex was better than I anticipated. I've been so uncomfortable with my poor mangled breast and I was afraid that would make it hard to have my husband touch it. I was afraid he wouldn't touch it because I think I needed some reassurance that it doesn't ick him out. What a sweetheart!

Tests and Farewell Sex

My surgery is scheduled for September 26. In the meantime, I have to go Friday for more tests! Yet another CT scan (I'm guessing it's of the breast, but no one has seen fit to tell me, the patient) and another chest x-ray. They're also taking blood, but that's not a big deal. I just want them to stop. Stop it. Just stop it.

The people at my office have arranged for a massage on Thursday morning. I can't wait. I love massages, but I haven't scheduled one all summer because of my breast. It sometimes still feels very painful to touch and that's completely unpredictable. Sometimes I have no pain, sometimes I do. Makes it a little hard to plan.

Hubby and I are having farewell sex this evening. I'm not sure how open I'll be to that with one breast missing. Just in case, I'm giving him (and me) one last hurrah. Who knows, I may schedule in another tomorrow night. You have to have something to look forward to, you know.

A Year Without My Breast

Before we can become who we really are, we must become conscious of the fact that the person who we think we are, here and now, is at best an impostor and a stranger. - Thomas Merton

I'm just back from the city where I'm being treated for breast cancer. Shortly after I returned yesterday, my surgeon's physician's assistant called me to tell me she can't schedule the plastic surgeon until the end of November. In addition to the mastectomy, I'm also scheduled for a bone marrow test and they'll install the port through which I'll receive chemotherapy. None of us feels particularly comfortable with waiting that long. My other option is to have the mastectomy done on September 26 and leave things as they are until later. Much, much later. Lori informed me that I won't be having reconstructive surgery for a year. Once again, I was not prepared for that news.

As a survivor of sexual abuse and the weirdest fucking childhood of anyone I know, the mastectomy triggers a lot fear. It's a terror that is both predictable and astounding.

My breasts and I have always had an unusual relationship. On the one hand, they were one of my very best features. Even as I've gotten older, they haven't begun to sag. On the other hand, I've had more men hold conversations with them than I can count. It can be annoying beyond compare to try to have a serious, intellectual discussion with someone whose eyes never get above my chest. On the other hand, breasts are the source of enormous power. That hasn't mattered as much after I met my husband. My hubby loves my breasts. On the face of it, you'd think that would be a good thing. It is a good thing until one of them is getting ready to disappear for a year.

I know Hubby loves me for much more than The Girls. He loves my intelligence and sense of humor, my gentleness and compassion, my creativity and humor. Nonetheless, I find that I'm terrified that he'll leave me when only one of The Girls shows up to party on date nights. It's so hard for me to confront those fears and I think that, no matter how much reassurance he gives me, I probably won't be able to rid myself of them.

That's because the problem is me, not him. When you've spent many years of your life reaping the benefits of being pretty, you just have to start to wonder if the world will be more difficult to navigate when that's no longer a factor. Do I have something to offer the world other than the way I look? Of course. Maybe I'm just uncertain as to whether other people can recognize those things.

I hate it that I feel this way. If, twenty years ago, someone had told me that there would come a time when I would be afraid of losing my attractiveness, I would have told them they were fucking idiots. And yet. Here I am. I can't help but think that this ha something to do with the values with which I was raised. Specifically, the idea that men really are shallow assholes who only respond to women's sexuality.

In my house, if the woman wasn't having sex the right way (i.e., the way my dad wanted it), then one could be replaced. Or one could be beaten until they got it right. Sex was the be all, end all. You cannot imagine how wrenching it is to write about this. It feels like something inside of me is being ripped apart. No matter how much I may identify myself as a feminista, the bottom line is that it seems I've adopted those values. It's just one of those nasty little secrets I've kept from myself.

I suppose the opportunitiy to be seized in this situation is a greater acceptance of myself, without regard to how I look. I suppose I should use this time to test the assumptions I've made about men and about me. Opportunities abound. I guess the question I'm left with is whether I'm strong enough to see them and, having seen them, can I find my way to embrace whoever will be still standing at the end of this year. I know she will not be the same woman who now sits here, typing.

More Tests

This will be the last blog for a little while because I'm going out of town (back to the hospital) tomorrow morning and won't return until at least Thursday afternoon. I had made a reservation at my usual hotel, but I discovered this morning that I didn't make one for tomorrow night. Oh, no problem, I thought, all of the evacuees are probably living in quarters that are a little more convenient and a little less pricey, given the long-term nature of their hejira. Wrong. Wrong in a big way. I tried to add a day to my existing reservation, but they were booked up. I called my mother and gave her some numbers to call of hotels close to the hospital and I went online to see if I could track something down. I found another hotel, same chain as my usual, but it was downtown and extremely expensive. Then I found a hotel they chose to describe as "high rise." It was very close to the medical center, but it could definitely be iffy accomodations and the most important thing to me is to be as comfortable as humanly possible. My mom found one that's pretty close, we think. I ended up cancelling all reservations for tomorrow except for the one my mom made. I don't know how I managed to get myself so confused about the dates of my medical tests, although I think it likely has something to do with the fact that I don't want to go.

That's been the almost incessant litany this weekend. I do not want to go do this. That kind of inner chatter just annoys the hell out of me. I used to do it all the time about working out. I'd start at around 3 p.m., with my regular workout time scheduled for around 7 p.m.: "I don't want to work out." "You have to." "Yeah, but I'm tired and I just don't see why I shouldn't take a break." "You have to work out." Finally, of course, I would just do it. I finally managed to find a way to break out of that stupid incessant arguing with myself, but I haven't been able to transfer it to the breast cancer scenario. My current response to not wanting to go is, "It'll be okay. I'll get it over with and everything will be okay." Oh yeah. That's really helpful. About twenty minutes later, I get to start the argument all over again.

Hubby's performance is imploding because of his co-author's atrocious behavior. He's managed to get fired from the production, which is so impressive, really. How does the co-author get fired? Now he wants to renegotiate rights to archival materials, script, et., etc. The performance is this coming weekend. My husband seems to be dealing with all of this relatively well. I know he's already stressed out about my breast cancer tests, so I'm sure this magnifies it exponentially.

That's all there is today because that's all the time I have.

Two Questions and the Answer

Whosoever wishes to know about the world must learn about it in its particular details.
Knowledge is not intelligence.
In searching for the truth be ready for the unexpected.
Change alone is unchanging.
The same road goes both up and down.
The beginning of a circle is also its end.
Not I, but the world says it: all is one.
And yet everything comes in season.

Heraklietos of Ephesos


Yesterday, I found myself pondering two questions.
Does god hate me?
Does the relentless afflictions in my life really reflect god's profound love for me, because god knows I'm up for it?

I really get tired sometimes of endlessly bucking up and surviving the nasty things that seem to follow me around in life, right from the beginning until today. I generally try not to see the broad panorama of my life because it's just a bit much to embrace. First there was my parents, then my uncle, then a rape, then a suicide and, finally, breast cancer. I would really appreciate it if the universe would just give me a break for a while.

I'm already getting anxious about my upcoming visit to the hospital. It will be a fun-filled adventure featuring CT scans, a bone scan and more blood work. The blood work is just a small blip on the radar screen, but the thought of having to lie still on a table for two hours is unnerving. When I had surgery, they made several attempts to do an MRI so I was on and off that table several times. By the time I got to the surgery holding area (I know there's another word for that, but my word is more indicative of how it felt), my lower back was in so much pain. Too much pressure applied for too long in that area. After they put a pillow under my knees, I was much better. There will be no pillow this time. I've been waking up at 5:00 a.m. lately and, though I'd like to blame it all on the corticosteroids I'm taking for poison ivy, I know that anxiety plays a role, too.

It's okay. Telling myself over and over that I don't want to do these things is really stupid and counterproductive. Somewhere in here the universe is sending me a message. Ultimately, I believe it is a message of love and growth. Staying open to that understanding waxes and wanes. If I get too absorbed in the suffering aspects, it may just prolong my inability to see clearly the potential for positive changes.

Sometimes Ignorance is a Blessing

After deciding I could read just a tiny bit in my "Living Through Breast Cancer" book, I was demoralized once again. I have yet to find even one sentence in that book that hasn't upset me. I know that's what happens; it happens every single time I open the damn book. Nonetheless, I don't seem to be able to stop myself. I'll think, "Oh, this part will be okay. This is past all of the torture stuff." Finally, I've figured it out. I can not have the book in my house. My mother volunteered to take it and she even offered to read it. I don't really wish for her to read it because it's too upsetting. Obviously, I don't have any control over whether she reads it, so I've let that go. As she started to leave with the book on Sunday, I had this panic attack and I tried to get it back from her. She's not going to give me the book back. Damn.

I've moved on to a book written by Bernie Siegel, M.D. He's a surgeon who's handled a lot of cancer cases. I had to call a halt to reading that book because his premise is that those of us who get cancer do so because they've given up on life. What the hell is that supposed to mean? Isn't that just blaming the victim? I have most certainly not given up on life. Sometimes I take a brief hiatus, but I always regain my will to engage in life. The fact that I have this blog is ample evidence that I haven't give up anything. I have, in fact, reclaimed something that I'd stopped doing long ago. If I was going to give up on life, I would have done it in 1965, after my suicide attempt. I guess I'm going to finish the book--because I compulsively do that--but I don't agree with his central premise.

Limitless Compassion

"...when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings." ~ Sogyal Rinpoche

Across the board, everyone I know has been surprised and sorry to hear about my breast cancer. However, there seems to be some differences in focus. Some people (mainly men, I think) are primarily concerned with what it feels like to face the prospect of losing a breast. "I can't imagine what you must be going through," they say. "Losing a breast!" Others ask me regularly if I'm thinking about my own mortality. I find myself having to examine these questions, even though I seem to be living a sort of half life since I was diagnosed. I'm not feeling much about anything these days.

A young woman who just moved in across the street from me was raped a couple of weeks ago. She came home from running errands on a Sunday morning and found a naked man in her home. My friends and my therapist expected me to be afraid after it occurred. I'm certain I must have looked askance at such an assumption. I wasn't afraid, not even before they caught him. I was cautious, of course, but I'm always cautious. I'm always aware of what's going on in my surroundings. I work out five days a week and I taught myself to stand up tall, I cultivated a vigorous walk. When I make eye contact, it's clear that you do not want to fuck with me.

Besides, why be afraid at this point? I'm far more concerned about long term survival than short term pain. Or even long term pain. I experienced sexual assault many times as a child. I lived through long years of terror of extreme physical violence. I watched someone I loved being tortured. One of my good friends commented a couple of years ago that I have a backbone of steel. At the time, I was a little puzzled.

Now I rely on that steeliness to steady my panic about how long I'll be here, how much time I'll have to grow my limitless compassion.

Daily Wrap Up

"It is the duty of children to wait on elders, and not the elders on children" ~ African proverb

I finally talked with my stepson and his wife yesterday. They called sometime before my operation, but not since. I'm sure Hubby is keeping them up to date on the Breast Cancer Saga, but I've been hoping for a call or an email from them just to wish me well. I even admit to being hurt by the seeming indifference to my plight. Okay, that just sounds unbelievably whiney. I do not whine. Starting over.

I spoke with my stepson and his wife yesterday. My daughter in law has had her jaw surgery, which she compared to my breast cancer. I said hello, how are you and something to the effect that I do, indeed, have breast cancer. There was a brief pause before she said, "I've got something similar." You can imagine my shock and horror. "Oh no! What's wrong?" She broke her jaw while she was eating a taco. I know. Exactly the same as breast cancer.

We talked about how the jaw surgery went and I just started blithering on about what's been happening and what is yet to come on the breast cancer front. She advised me that she knows a guy whose father had prostate cancer, went to Mexico to be treated herbally and is now cancer-free. She didn't exactly advise me to head on south of the border, but there was an implied suggestion there. I'm not going to Mexico. She suggested Tai Chi. And accupuncture.

These things may be an expression of caring. Sometimes people don't exactly know how to say they're concerned or they wish you well. Suggesting you go to Mexico and abandon conventional treatment just isn't the way to do that.

My stepson seems to be working steadily. He's also been recording some new music. We discussed his mom's bout with breast cancer several years ago. I've wondered how the prospect of another family member with cancer would be for him. I could be wrong here, but I think he may be avoiding the necessity of acknowledging it. Who knows. I'm not interested in additional speculation as to why he hasn't been in touch. He's a guy. That pretty much sums it up, probably.

On the work front, we may be losing another employee. Ed, the computer guy, died several weeks ago. I think he was in his late 70's or thereabouts, so it wasn't a tragedy. I just don't think I've ever experienced that before. Now another person, a woman, is in the intensive care unit at one of the local hospitals. An insect bite became infected, she went to the minor emergency clinic and they summoned the ambulance immediately. After she got to the hospital, her kidneys failed. The infection had reached frightening proportions, an 8" x 10" section of her tummy. She's responding to dialysis and antibiotics, but I think there's still some question as to her eventual recovery.

My other dearly beloved co-worker, k., is out of the office again. This time her husband had a really, really bad headache yesterday that sent him to the emergency room. They didn't know what was wrong with him. (Let me hazard a guess here: a headache?) He woke up with the headache again today so she decided to stay home with him. She was afraid to leave him alone. He called the office early this afternoon and reported to us that he's feeling better (let's all celebrate!), but his wife is spending the rest of the afternoon with him. This is the woman who thought her sinus infection was comparable to breast cancer. The world is just filled with nitwits and I seem to attract them.

I woke up feeling down today. Who the hell knows why. It's just been one of those days when the sun is shining, but I'm completely incapable of bucking up. Yoga tonight may help.

America held hostage day 1424
Bushism of the day:
"You know, let me talk about Al Qaida just for a second. I made the statement that we're dismantling senior management, and we are. Our people have done a really good job of hauling in a lot of the key operators. Khalid Shaikh Mohammed. Abu Zubaida. Ramzi--Ramzi alshibh or whatever that guy's name was."
—Bush, at a July 30 press conference
Source: Washington Post, July 30, 2003

Website of the day: Recovering from Workaholism
http://www.io.com/~workanon/

I'm now a cliche

Sometime in the past four days, I've developed a massive crush on my breast surgeon. I'd be willing to bet that happens pretty regularly. That's what makes it so fucking annoying. He's not a particularly attractive man and we've only spoken together for about 30 minutes in all four of the times we've occupied the same room.

My therapist would say that it's just a viable distraction. I think about how much I love my surgeon in order to not think about breast cancer.

This whole situation is a shining example of what positive benefits can be latched onto from a truly bad childhood. I have got survival skills to die for (sorry, I just couldn't help myself). This latest distraction is just one among many tactics I learned years and years ago.

People in my office are in awe of my good cheer. They don't know I'm spending my time fantasizing about my oncology surgeon. One of my co-workers just poked her head into my office to remind me to leave. I'm on an abbreviated work schedule while I recuperate from surgery. I guess that means I need to leave. Oh yay...more time to think about the doctor!