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!

Good news and bad news

"If God had intended for breasts to be seen, He wouldn't have created large woolen pullovers" ~ Tracey Ullman

I returned to Hospital Land last Thursday to have the surgeon perform a follow up exam. The appointment was scheduled for 4:00 p.m., but it was 8:30 before I finally got to see him. That was okay because they didn't make me wait in one of those tiny exam rooms.

When the doctor arrived, the news was mixed. On the up side, they found no cancer cells in the sentinel node biopsy. Excellent news! On the other hand, they found cancer cells throughout the tissue in my breast. That means I will most certainly be having a mastectomy, chemo, radiation and reconstructive surgery. I was stunned. I was in no way prepared to hear any of that. I just kept nodding my head as they talked to me.

They're going to conference about my case today, to determine in what sequence things will be done. I have a fairly rare form of breast cancer and it's manifesting in unusual ways. This man who performs breast cancer surgery every Monday, Wednesday and Friday hasn't ever seen a case where cancer cells are so rampant in one breast, with no lymph node involvement. The cancer is low grade, but everywhere. I'll need to have a bone scan and CT scan of my liver. I'd really like to get that over with immediately so I could just breathe a little easier about the whole metastasizing issue. I found out today that my next appointment won't be until mid-September. After the tests, I'll meet with the medical oncologist (as opposed to surgical oncologist) to get results of the tests and be informed as to what comes next.

Once again, the hardest part was calling people and telling them the news. Without exception, everyone started crying. Oddly enough, the only time I felt like I was going to cry was when my surgeon hugged me. I generally have a distinct aversion to being touched by men I don't know extremely well. I guess after someone has cut out huge chunks of breast tissue, there's no reason to stand on formality.

I think it may be easier to be the patient sometimes than the person who loves the patient. There's a profound sense of helplessness when it's happening to someone you love. Since it's happening to me, I've already come to terms with my own helplessness. It doesn't bother me that much anymore and it only takes a couple of seconds for me to weed out the things I can or can't control. After that, it's just a matter of ongoing distraction. Because of my childhood, I am absolutely outstanding at distracting myself. People around me are awed.

I keep telling people that I'm fine for right now. When my hair starts falling out and I have a missing breast, I may not be so cheerfully detached.

Moving Right Along to Surgery

My time is limited these days, so I'm temporarily suspending fabulous quotes and the daily W. count. Sometimes you just have to make adjustments.

Back to the breast cancer fun. I was in so much pain all day that I'm probably forgetting some of the things they did to me. The next big event I remember occurred some time after the mammogram, when they sent me off to a cot to wait for the nuclear medicine guy to arrive. Nuclear medicine guys are like the rock stars of cancer pre-op. Everything stops until he gets there and he brings a small coterie of groupies with him. I'm sure they have some practical function other than to admire his dedication to detail, but I have no idea what it might be. My guy brought some very scary looking equipment to ensure no one else was exposed to highly carcinogenic materials. He injected radio isotopes into the area where those wires were sticking into my breast. He he pressed down hard and jiggled the skin several times to make sure the poisonous dye got spread around adequately, I suppose. That felt great. I had enough presence of mind to wonder whether introducing cancer-causing agents into an already cancer infested area was such a great idea. I wondered about how that will alter my future.

We had to wait a little while for some reason related to the radio isotopes. They need to get settled in or something. I was just glad for a break in the action centered around the needles. They shuffled me off to wait in yet another freezing room for the next leg of the adventure. I was cold and tired, but I'd ceased to be hungry long ago. By that time, I'd begun to feel a little like I imagine people felt after they arrived at concentration camps. I was stripped of everything that was personal--no clothes, a number instead of a name, no shoes, no food, no water, no one I knew to hold my hand. You get my drift.

Eventually, a young woman came to get me. She made me get up on an incredibly hard and cold table while she attempted to take some kind of pictures of the radio isotope saturated tissue. She took the pictures and sent me back to my little cell to wait while they made sure she did her job well. She didn't. We did two more rounds of photos. The second time I was bleeding from the wires, so we had to wait until that stopped before we could try again. By the time they got what they wanted, I was in so much pain from the needles and the jostling and the lying flat on my back on cold hard surfaces that I couldn't even think anymore. I was like a dumb animal, enduring the torture without thought. I was so worn down it didn't even occur to me to cry.

After about six hours of being shuffled from one cold place to another, with needles sticking out of my breast, they finally got around to operating on me. They removed about 1.3 cm of tissue and did a sentinel node biopsy. They are cleverly postponing sharing the results of the biopsy until I see them on Thursday. Will I have chemo or not? Just another wonderful surprise from One of the Best Cancer Hospitals In the Country. They will let me know on Thursday. That is, unless they change the appointment. They have this truly annoying habit of telling me I have an appointment at a certain time on a certain day, then telling me it's on another day and time when I call to confirm. God, I love it when they do that. People keep asking me if it doesn't stress me out to have this ever-changing appointment situation. Oh heavens no, I love being kept in the dark about these things. It's just so much more fun and interesting if, in addition to wondering whether I'll have chemo or another operation, I also get to wonder about when my appointment is actually going to occur.

I just went directly back to work last week, three days after surgery. No one required that I do that, I just thought I should. In the little paper they gave me after my operation, they told me I could just resume normal activities. So I did. My therapist, my psychiatrist and my mother would all like to know why I thought that was a good idea. Well, if they had said, for instance, "resume normal activities, but only for four hours a day," I would certainly have been sitting on my sofa instead of sitting in my office in front of the computer. It has become apparent that I wasn't supposed to resume my activities. Goddamn it. It's so annoying to know that I could have been hanging around my living room, eating bonbons instead of watching one of my co-workers have a serious case of the weepies all day.

As to why my co-worker was weeping at her desk every time I walked by, I was not much inclined to question her. She had already compared her sinus infection to my breast cancer...they're essentially the same in her mind. I don't mean to sound overly dramatic, but I'm pretty sure that breast cancer trumps sinus infection every single time.

Another of my colleagues has decided that she is going to drive me to Houston and back on Thursday. Has she asked if that's what I'd like to do? No. Why bother to ask me. In fact, when I thought the appointment was last Thursday (see above), she wanted me to change the day specifically so that I could leave the driving to her. Oh, sure. Let me alter my breast cancer schedule to accommodate your needs.

I think I've complained enough for the day. Here's the deal. On Thursday, I find out what happens next. In the meantime, I'm continuing my friendly relationship with Xanax.

Mapping my breast with needles

I've been advised by one of my doctors that I shouldn't have been working as much this week as I did. That means I'm going home at lunch and not coming back.

Another segment of the breast cancer ordeal. I had to show up at the hospital at 8:00 a.m. on the day of surgery. No food. No water. No coffee (OH NO!). Not even any chewing gum or breath mints. What the hell is the deal with that?

First they trotted me off to the ultrasound room, where they took all of my clothes away from me and delivered them to my hubby in the waiting room. I was a little cheered up because I thought that meant I might be getting the surgery done early in the day so I could eat later on. (My needs are so basic at this point...even just coffee would have been fine.) A woman came in first and did some looking around. Then an actual doctor came in to have a look-see himself. They then split into two teams. The doctor was busy making marks on my breast and the woman was continuing to look all around my breast with the ultrasound thingy. The doctor put a number of marks on my breast and then he got the lydocaine. I knew that was a numbing substance, so I started to wonder what the fuck they wer planning to do next.

What they did next was one of the worst things I've ever had to endure. They stuck two needles (more like fine gauge wire) into my breast. He left them there and told me not to look at them. The woman who had been doing the ultrasound work helped me get up and get the hospital gown on over the needles sticking out of my breast. Mammogram time. Needles are being jostled around while they're mashing my breast between two plexiglass plates. When she was through, she taped a styrofoam coffee cup on top of the needles. I guess that was supposed to keep people from moving them around. I laughed as she taped it onto me. That was the last time I laughed that day.

On that note, I see it's time for me to go. I'll have to continue my adventures later.

What's the matter with me?

I was planning to write more about the major fun I've been having with breast cancer, but I'm feeling uninspired at the moment. The past couple of days I've been in a sorrowful mood. I don't exactly know why, but one of my colleagues noted that I might be sad because I have breast cancer. Oh come now. That's way too easy.

I've also been having more pain the past couple of days. It's been much worse than even the immediate aftermath of surgery. I have these exercises to do every day that definitely increase my level of pain.

I'm also just tired, I guess. I've been at work all day the past couple of days.

I'm boring myself again. Maybe tomorrow.

The Day Before Breast Cancer Surgery

I've been having such a rollicking good time in my absence that I hardly know where to begin. I know. I'll start with last Monday. A couple of my colleagues were out of the office on Monday and the woman who is supposed to answer the phone called in to say that one of her daughters had pink eye and this crisis would make it impossible for her to get her sorry ass in to the office. Pink eye. I fail to see why this would necessitate staying home. We have a young college student who answers the phone, but she doesn't get to the office until 11:00. So, yes, boys and girls, I did stay until 11:00.

I still had to drop off one of my huskies to get her vaccinations current, cook enough rice and chicken for my diabetic huskie, pack my clothes, take both huskies to the kennel where they were going to stay (all the way across town)and a handful of other miscellaneous errands. I went to the grocery store to pick up the aforementioned chicken and rice. I was also supposed to be getting additional insulin.

Here might be a good time to mention how much I hate grocery stores. There are far too many people in them and every single one of those people is somehow managing to be in my way. They're chatting in the middle of an aisle. They're listlessly looking at the salad dressing and blocking me from getting to something I need. They're trying to mow me down because they've come around the corner too fast to see me. I was prepared, though. I kept breathing deeply and focusing on the matter at hand.

I got home and found that I'd forgotten the insulin. Back to my neighborhood Walgreens, where I was fourth in line at the pharmacy. By the time I got to the counter, I had already been praying not to get the stupid pharmacy tech. You could tell she was stupid way back at the end of the line of sick people (who were probably radiating germs, all of which were landing on my person). I got the competent employee, but the stupid one didn't know how to finish out her transaction, so they switched and I ended up with Stupid anyway. I told her I need a vial of Humulin L. This is really common stuff. Lots of human diabetics use it. She looked at me like I'd suddenly started speaking Swahili.

"A vial? Of?" she asked.

"A vial of Humulin L." I said it loudly, hoping that would help her understand what I wanted.

Blank look.

"It's insulin," I said. No, I did not yell. I was hanging on to the remaining shreds of patience left in me.

Stupid slowly shuffled off in a way that made me think that, even if she knew what insulin is, she had absolutely no idea where it might be located in the pharmacy. She paused for a moment before she rounded the corner and the competent person noticed Stupid was fucking up again.

"Insulin?" Stupid said.

"It's in the refrigerator." The competent one left her customer and went off with Stupid to show her what a refrigerator is and where it's located in the pharmacy. I breathed a sigh of relief, thinking that once the competent one got involved, I'd have the insulin in my hands in a matter of minutes.

Wrong.

Competent One returned to her customer, but there was no sign of Stupid anywhere. Finally she shuffled back over to the counter, gazed at me and said,"We don't have that."

I was ready to leap over the counter to beat her to death with a prescription bottle. It might have taken some time, but I assure you I would definitely have killed her had I been given the chance. No time for murder, though. Off I went to yet another Walgreen's.

I stood in line and, when I got to the counter, I looked at the young man who seemed like he might be able to help me. I requested Humulin L. He smiled at me and told me he didn't know what that is, but that he would definitely get it for me.

I helped by telling him it's insulin. Another competent person was dealing with the drive-through prescriptions, but she pointed him in the right direction. Sure enough, he came back in short order, put the insulin in a bag and took my $30.

I drove back to my house, where my husband was standing in the kitchen looking miserable while cooking rice in the microwave. I counted up the bags of rice and the separate bags of chicken. We had enough. I started to load everything into the car, but then I noticed the time. It was too late for me to meet the 6:00 p.m. deadline for dropping off my dogs. At that point, I lost all ability to function and had absolutely no clue as to what to do next.

America held hostage day 1405
Bushism of the day:
"Our enemies are innovative and resourceful, and so are we. They never stop thinking about new ways to harm our country and our people, and neither do we." —Bush addressing a group of witnesses at the signing of the Defense Appropriations Act for Fiscal Year 2005 in Washington, DC on Aug. 4.

Website of the day: Quackpot Watch
http://www.quackpotwatch.org/

Stop Making Sense

It's just one of those days. The closer I get to the surgery date (August 3), the crazier I get. Up until the past couple of days, I've been more than capable of distracting myself from The Breast issue. Every once in a while, when I found myself at a loss for something to amuse myself with, I'd have a tiny anxiety attack. I'm fairly well medicated (by a licensed physician), so I've had a little help in preventing myself from collapsing into a fetal position and drooling on the carpet. I've also just got exceptional skills in that area, honed from years and years of living in The Original Crazy Land with my parents.

All day today, I've been incapable of determining whether anything I've said makes sense. I'll be having a conversation with someone about The Breast or about something completely unrelated and it dawns on me that I may be incomprehensible. I had a long telephone conversation with my therapist today and, somewhere in the middle, it occurred to me that we were probably not talking about the same thing.

I keep asking people, "Does that make sense?" Heaven only knows what they think. I'm not generally all that concerned about my ability to be clear with people. At this point, though, if I don't check, I have no idea whether the internal dialog is bleeding over into the external dialog. I don't know...does that make sense?

There's much more to the whole hospital story, but I don't think today is the right day to tell it. I can only hope that, by tomorrow morning, I'll still remember my name and how to drive myself to work. Putting nouns and verbs together in a coherent manner may beyond my capability, though.

Houston. It's a Whole Other Country

"The more you let yourself be distracted from where you are going, the more you are the person that you are. It's not so much like getting lost as it is like getting found." ~ Willliam Stafford

Houston. If you've never been there, take my advice and stay home. I'd been there several times before my recent foray to M.D. Anderson. Furthermore, I've traveled a lot over the years for various jobs and I've gotten very comfortable with reading maps. There are only a couple of problems here. The first is that I have a phobia about bridges, overpasses, flyovers...if it's high, I don't like it. The second is that whoever is responsible for making road signs in Houston should be taken out and shot. Summarily.

The first order of business was to find a route from my city to Houston. It's only around 350 miles or so, which is no big deal because I know how to get there without going over any bridges (or any of the other aforementioned high places). Once one arrives in Houston, it becomes well nigh impossible to avoid Loop 610. It's really tall in some places and you're frequently required to cross four lanes of traffic in a matter of seconds because they've decided no one needed to know more than a half mile in advance that people would have to exit the freeway at some point. Thousands of automobiles, travelling at breakneck speed, completely oblivious to the fact that others are on the freeway, too. Or if they do notice, it's because they're having a road rage event. No one is much inclined to cut anybody any slack.

We decided to forego the Loop and all of the other freeways in Houston. The shocking thing is that it can be done. We located a small road that used to travel the outskirts of the city, but it ended up in the heart of downtown. There were just a few twists and turns which were not marked on the map at all. Arriving in the heart of the city was one of the many day trips to hell I endured during the three days I was there. Streets fork and, not only do they not warn you in advance that it's going to happen, they don't even put street signs up so you have any hope of knowing if you're on the road you're supposed to be on. There's no way of telling the name of the streets that intersect. Some streets are one way, then a two way, then a one way again. What the fuck were these people doing when it came time to order street signs? Do the guys in Houston have some stash of LSD left over from the 60's? I could go on and on about this...and I may again at some point, but I have too much to cover to get obsessed over it now.

We finally arrived at our hotel at around 9:00. We'd gotten into the city around 6:00, but we aimlessly drove around, hoping to get a clue as to where the hell we were at any given moment. Having arrived at the hotel, we breathed a big sigh of relief, then we made the fatal decision to go out for dinner. We hadn't eaten since early that morning and I knew that not eating was not an option. Off we went, I tried to stay on the same road because I thought if we went in a straight line, there would be no problem getting back.

We ended up eating at a Sonic. Just typing it here depresses me, but even more depressing is the fact that we were thrilled. Foot long hotdogs--after not eating for 12 hours, they start looking pretty damn good. By 9:45, we were on out way home.

At 10:30, we were still on our way home. Streets kept branching off and, even if there had been street signs, we wouldn't have been able to read them because Houston city officials apparently don't think installing adequate lighting is a requirement. I just drove. I doubled back a couple of times and my mom was giving me a hard time about the number of times we'd been by the same Sonic. Suddenly, miraculously, we were on the right street. To this day, I can't figure out how that happened.

The real fun began the next day.

America held hostage day 1390
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: Center on Policy Attitudes
http://www.policyattitudes.org/

By All Means, Do Clamp Down a Bit Harder on My Breast

"The greatest evil is physical pain." ~ Saint Augustine


For once, St. Augustine and I are in agreement. I went to the cancer center last week and was treated to the most intense physical pain I've ever experienced. Just having people manipulate your breasts and position your body in ways you otherwise thought impossible is difficult enough. I steel myself for the physical discomfort and emotional humiliation for my annual mammogram. I had no time to search for a bullet to chomp down on. I didn't even have any Jack Daniels on hand.

The first couple of slides were about what I expected, but then the perky radiology girl started twisting the hand crank. I wear a D cup bra...god help me. She managed to take all of that tissue and squish it down to about a quarter of an inch thick. "Let me know if it gets unbearable. We want to see everything, but we don't want to torture you," she said. She then decided that one of the breasts was incorrectly positioned, so she released the breast, had me lift up an arm, grab on to the other breast with the free hand and turned on the compression machine. (I have no idea what the actual name is, but this will do.) Then the dreaded hand crank. Once again, I was close to tears and I am not a crying kind of person. She proceeded to the right (unaffected) breast, found the threshold of exquisite pain and continued to crank. Having finished that, she said, "I'm going to let you have a little break while I go check with the doctor." I was feeling a bit more optimistic. I don't think I've ever had a mammogram that had to be redone immediately.

I did my best to cover as much of me as the flimsy little gown would allow. I sat down and waited to be released and sent on my way to the ultrasound test. Why I haven't come to realize that optimism is hardly ever rewarded is a mystery to me. I'm an upbeat kind of person. There's no way I could have survived my childhood without a remarkable ability to find the up side in virtually all situations. I'm steadfastly optimistic no matter what. The perky radiology girl came back and announced that we'd be taking a couple of slides over again. One of them didn't show enough of the muscles behind my breasts. I can't remember what was wrong with the other slide. The next thing I knew, she was at that fucking hand crank again, chirping at me about how much she didn't want to hurt me. The woman missed her calling...she should definitely look into the possibility of being a dominatrix.

There was so much fun on this trip that I find I have to divide it into manageable portions. Remembering too much too quickly is clearly not in my emotional best interests. I'm having breast pain from the memory alone. Furthermore, now I have to completely recalculate how many days that idiot W. has been in office. Shit.

America held hostage day 1389
Bushism of the day:
"It's going to be very important for the Iraqi authorities to reach out to those people and talk about a system that guarantees minority rights, and a system which says that for some the future is bright."
—Bush, speaking in Washington, D.C., Dec. 15, 2003

Website of the day: Public Citizen Health Resources
http://www.citizen.org/hrg/links/index.cfm

I Caused a Minor Uproar at the Hospital

This will be just a breast cancer update. I thought I had all of the arrangements made to have surgery on the 21st. As I may have mentioned before, I don't live in the same city as the hospital where I'll be treated. I also have two dogs, one of which is diabetic and very, very moody. I began to get concerned this week that I'd heard nothing from them and the 21st is rapidly approaching. I have to have some lead time to make arrangements for everyone (especially the dogs). What to do?

I searched the website for clues as to the correct person to call. Silly me. No luck. I thought about calling Leslie, my original bcl, but I have a very significant dread of being a pest. I determined that I'd just have to figure it out for myself. That's a very comfortable conclusion that I frequenly come to in any number of situations. Having made that decision, I went back to the website with a renewed sense of purpose.

I found a section named "Information." That seemed as good a place as any to begin. I commented that I had a surgery date set, but no one had contacted me about it. The brochure they send you when you become a patient says that you will need to come at least a couple of days prior to surgery so that they can perform some tests. I told them that I need to have some time to set up accommodations for everyone. I thanked them for their help.

I finished that email at around 10:15. By the time I got home for lunch at 11:00, Leslie left a message on my home answering machine. In a testy tone of voice, she told me that she had received a copy of the email I sent to the Information folks. She pointed out that she had provided me with a callback number in case I had any questions.

When I got back to work, she had left the same message on my voice mail. Oh dear. I have once again caused an uproar. My first thought was that I had inadvertently created problems for Leslie by making her supervisors believe she hadn't done her job well. Aside from coughing frequently in my ear, Leslie has been very helpful, so I was anxious to correct my mistake. I called Leslie and began apologizing profusely. I offered to send additional apologetic emails to her supervisors. That was unnecessary, she said.

Leslie then informed me that the date I believed to be the surgery date is really just a consultation date. We will explore treatment options. Oh great. I have no idea if this is also the preliminary event they mention in their brochure that can last for several days. I don't even really care at this point. I would just like to do something. Today is not a good day. I've been consuming chocolate to help with mood elevation. I probably need to go get some now.

Things Are At A Standstill

Still no word from my friends at The Best Cancer Hospital in the United States. (That's what they would have us believe, anyway.) I had to call my insurance company for another issue earlier today and they said no one from the BCH had called. Fabulous. My mother and one of my aquaintances here at work suggest that I need to call someone at BCH and light a fire under their lethargic asses (due to high temperatures and higher humidity levels, no doubt). I'm not enthusiastic about it because it's going to burn through hours of my precious free time. It will be an enormous hassle. I don't know...I like being in denial. I guess I'll make that decision tomorrow. Right now I have another problem.

I have an appointment in exactly an hour to check on the progress of my macular degeneration. God knows I've done everything I know to do to halt its growth. I've started eating five (yes, five!) fruits/vegetables per day. Most of them are high in the specific antioxidants that should control the degeneration. I take the vitamins they've told me to take. I quit smoking a year ago. Nonetheless, I'm reluctant to go because I am up to my eyebrows in bad news. I don't want any more bad news for a while. Is that so bad? No. I was hoping my insurance company would cause me to postpone the appontment but, for once, the insurance company is ready to pay.

Heck, just when you want them to be lazy fuck ups, they're not.

Okay, Now I'm Anxious

"Independence I have long considered as the grand blessing of life, the basis of every virtue; and independence I will ever secure by contracting my wants, though I were to live on a barren heath." ~ Mary Wollenstonecraft Shelley

Thursday and Friday of last week were tough. There seemed to be a general pall over everything, but I couldn't pinpoint the cause. My therapist suggested that it might be the end result of ongoing high anxiety. Hmmm...I didn't feel anxious. Of course, the only time I feel anxious is when I have a cold lump in my stomach. Other than that, I'm pretty clueless. Take the Xanax, she said. So I have been. It makes me sleepy, though, so I'm not crazy about taking it. If I split the pill in half, that has absolutely no effect whatsoever on me.

Starting yesterday, even I could tell I'm anxious. I just want to get the whole surgery thing over with. It's not so much a thing about being afraid of the cancer or the operation itself. I have no idea what the anxiety is about. My mother says this is predictable and normal.

On Friday, my therapist pointed out once again that I'm pathologically independent. I really hate it when she says that, primarily because I have no idea what it really means. I've always taken great pride in my independent spirit. I think for myself. I try to be as self reliant as possible. We were discussing my dismay when I found out I might not be able to dress myself after the operation. That means I have to depend on someone, primarily Hubby. I hate that I hate that I hate that! This is where the pathological independence quote came in.

I've never had anyone I could rely on. Not my parents, certainly. Not my boyfriends. Not even Hubby. At my advanced age, I wouldn't think it likely that I'll be able to curb my independence. As if there would be someone around who could actually deal with me being less independent.

I took my last Xanax at 10:00 this morning and I'm still feeling like I could just nap sitting up. Fuck.

America held hostage day 1375
Bushism of the day:
"Well, I think we need to work with governments and institutions and NGOs to encourage the institutions of a free society," Bush said. "See, one of the interesting things in the Oval Office—I love to bring people into the Oval Office—right around the corner from here, and say, this is where I [have an] office, but I want you to know the office is always bigger than the person." —Bush, responding to a reporter's question about how he plans to accomplish U.S. goals in the Middle East
Source: Al Kamen, The Washington Post, "Rocking the Vote in the Middle East," Feb. 20, 2004

Website of the day: Center for Media and Democracy
http://www.prwatch.org/

Prince Albert in a Box

Perhaps all the dragons of our lives are princes who are only waiting to see us once beautiful and brave." ~ Rainer Maria Rilke (1875-1926)

I've been sitting here for about the last two hours, reading other people's blogs and debating whether I should call Leslie. I talk myself into it then I talk myself out of it. I mean, if she had something to share, wouldn't she call? Seems pretty likely to me. On the other hand, this is driving me fucking crazy. I just need to know things are moving along. Okay. Okay. I'm calling. Now. Oh god, she answered the phone. I'm on hold now. I feel like a twelve year old making prank calls--maybe I should just ask if they have Prince Albert in a box and hang up.

Oh excellent. She's made me an appointment for July 21. She's requested a lot of shit that I thought she already had, like my pathology report and the ultrasound. She sent my file to financial to make sure somebody's going to be willing to pay for all of this. I'm guessing they'll call promptly if they discover that I need to ante up. I don't anticipate a problem, though. All of the other breast cancer bills have been paid promptly. I also received a hefty check from my friends at AFLAC. It's just a little bonus payment for those of us who have a cancer policy who then actually get cancer. Woo-hoo! Party time! I think the extra cash from that policy may ensure that I won't have to amass enough debt that it'll take till I'm 70 to pay for everything.

My big question is, if Leslie has already done all of that, why hasn't Leslie decided to keep me posted on the progress? How annoying. I could have been sitting around waiting for her to call until...what?...the 20th? Hey, lady! I have breast cancer! I need answers. I need reassurance. Is everyone else just fine and dandy with waiting around not knowing what's going on? Just more evidence of the decline of customer service standards.

One more bit of good news...no chemo. Yay!!!!! I thought that was likely, but it's so nice to hear it from someone who actually knows.

On the other hand, I've been down all day today. I thought I would feel better once I got some definitive information. No. I'm still feeling like I have about ten pounds of lead located somewhere in the center of my chest. Fuck.

I'd planned to do more yoga tonight. Last night's tape was "Pure Tranquility." It might lead to tranquility someday, but today I feel like I've been run over by a truck. Tonight I'm planning on doing a more aerobics-oriented series. Maybe I'll be able to climb the stairs tomorrow, maybe not.

I'm thinking of breaking with tradition and dressing up tomorrow. Everyone else here honors the casual Friday rule. As a matter of fact, it's a little like a requirement, not just here, but everywhere in America. I don't care. I never let a little thing like other people's expectations prevent me from doing anything I please. I just have this serious need to feel pretty. Beats the hell out of me. I guess it's the knowledge that I won't be so pretty soon. It will be quite some time before I'll be able to wear any cute dresses. I'm going to have some difficulty getting dressed after the operation. I don't want to think about that right now.

America held hostage day 1372
Bushism of the day:
"I'm honored to shake the hand of a brave Iraqi citizen who had his hand cut off by Saddam Hussein." —Bush, meeting with Iraqi citizens who received medical care in the U.S., May 25, 2004

Website of the day: G8 Information Center
http://www.g7.utoronto.ca/

Leslie BCL leaves me hanging

No word from Leslie, my official Breast Cancer Liaison. It's beginning to make me a little nervous. What reasons could there be for not calling? My co-worker reminds me that my situation isn't as pressing for them as it is for me. Why don't I find that comforting?

Week Three: More Decisions

"I observe the physician with the same diligence as he the disease." ~ John Donne

I was on vacation last week, so I spent the bulk of it trying to learn as much as possible about breast cancer. I determined that the type I have accounts for only one to two percent of breast cancer diagnoses. It is invasive, but doesn't tend to metastasize. It grows slowly. I also have some pre-cancerous tissue, but I'm not any clearer about that than I was at the beginning of last week.

I decided to try to get treatment at one of the best cancer treatment facilities in the country. As soon as I made that decision, I started to wonder why I thought my situation warranted it. Even though I banished the thought, it's continued to nag at me from time to time. I guess the fact that it's a fairly rare form of breast cancer was a huge deciding factor. I think that if my dad had gotten better treatment of his prostate cancer at the beginning, maybe he'd still be alive now. (Well, maybe not.) The surgeon who did the stereotactic biopsy told me he felt "comfortable" performing the surgery and that he'd be happy to refer me to an oncologist. He said the oncologist would only be able to hazard a guess about treatment until the surgery was performed. Ditto with the radiologist.

While he talked to me about my diagnosis and the options, he kept checking his pager every 5 seconds. The entire lecture (it was most assuredly not a conversation) lasted about five minutes. You know, when you're going to tell someone they have breast cancer and need to have surgery, it might be good to clear your schedule a bit. He asked me if I had any questions, but I was still trying to process the meaning of the diagnosis even after he left the room. Breast cancer. You have to let it sink in a bit, because the brain shuts down temporarily. His nurse came in a couple of seconds after he left. She was obviously concerned about my state of mind and reminded me that many women survive breast cancer now. She offered to talk with me if I needed to talk.

I didn't need to talk because I was too dazed. I went to the surgeon's office by myself, because I wasn't all that concerned about the results of the stereotactic mammogram. I don't suppose it really mattered because, whether or not I had someone with me, I would have been alone, anyway. By the time I walked out of the clinic door into the parking lot, my life had already permanently changed. It's one of the few moments in life when there's a little click in your head and you know, without a doubt, nothing will ever be the same. That's about all that I knew, but that was enough. And I knew I was alone.

All in all, the surgeon didn't inspire a lot of confidence in me. Even if I could be certain he would be a competent surgeon, the five minute lecture didn't bode well for our relationship. I'm not fond of male doctors, especially those who lecture me instead of actually engaging with me as a human being. I am not just a piece of meat that you're going to cut on, buddy.

He told me that I need to make a decision about the surgery soon. He gave me four weeks to come up with a plan. I decided almost immediately that I don't want him to do the surgery.

Aside from the rarity of the type of cancer, the other issue that is very troubling is the the lymph node biopsy, which will be performed at the same time as the cancerous tissue is removed. I've learned that there are far-reaching ramifications if it isn't performed properly. Having an experienced surgeon doesn't guarantee anything, but at least I'll have a better chance of success.

I got considerably more anxious as I attempted to set up appointments and get my medical information ready for M.D. Anderson. My therapist keeps telling me to just take some Xanax. Actually, so does my psychiatrist. Sometimes I take it, sometimes I just try to manage it through conscious breathing. I've started doing yoga more instead of my usual aerobics and weight training.

My hubby cries from time to time. I am as comforting as I can manage at any given time. He started crying last week and I suddenly started wondering if he knew something about my cancer that I don't know. Well of course he doesn't. In the early stages of assimilating the information about my disease, I'm a little paranoid because I'm very frightened.

Cancer is a participatory event, I've found. Everyone who knows about it wants to offer advice or they just really, really want to talk about it. I'm mindful of their caring, but sometimes I don't want to talk about it. I don't need anyone's advice...unless they've had breast cancer, too. They want to cheer me up. All of that is just exhausting. I have to deal with my own ongoing anxiety, verging on panic. I have to summon the energy, concentration and organizational skills needed just to get me through the preliminary steps of arranging for medical care.I don't have any extra energy to engage with everyone who wishes to talk with me about it.

To top it all off, my huskie, Miss Woo, has been terrified for three days now because of fireworks going off in my neighborhood. (We haven't had any rain for 29 days now and the temperature has been hovering in the upper 90's. These people are lunatics.) She's been keeping me awake every night and the lack of sleep isn't doing much good for my emotional stability.

Tonight I hope to do some yoga and get a full night's sleep. We'll see....

End of the First Week

"And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid." "The Love Song of J. Alfred Prufrock," T.S. Eliot

That poem has been echoing in my head for the past couple of days. I am afraid. Perhaps it would have been better if I hadn't known about the invasive nature of the carcinoma. I've even been admitting to people that I have waves of panic wash over me all throughout the day. Sometimes I'm very sad. I'm more reluctant to share that with others. I guess it seems to me that fear is a lot more understandable by people who haven't had cancer.

I managed to sleep past four a.m. today. I gave in and took a Xanax early yesterday evening and I also took an extra 10 mgs. of Elavil so that I could sleep through the night. My stress level is very high, leaving me exhausted even if I do manage to get enough sleep. When I'm sleep deprived, it's hard to even get up the stairs at work.

I've been continuing to work out, though at a much-reduced pace. I did a Bellydance tape for the aerobics workouts and yoga instead of weights. I feel like a slacker and I'm torn between thinking I need the extra rest and thinking that exercise is really good for dealing with anxiety. I don't know.

I decided today that I'm not going to do the mastectomy. The long-term survival rates are the same. I think there may be more potential for infection with the mastectomy. I'm also concerned about recovery--moving tissue around from one place to another has to be extremely painful and probably prolongs recuperation time.

Typing "recuperation time" sent another wave of fear through me. I can't help but hear the tiny voice in my head saying, "Maybe there won't be a recuperation period." I need to remain optimistic about my long term health.

I have next week off for vacation. I'll be continuing to attempt to push things forward so that I can get the surgery over with soon.

The First Inkling

Every year since I turned 40, I've dutifully made an appointment to get a mammogram. Every year, I'd receive a report that said, essentially, "We think you're fine, but you have really dense breast tissue, so we can't tell with any degree of reliability whether there's something there we can't see." I used to get anxious about those reports until my primary care physician told me that many people have dense breasts and, more likely than not, I would be fine.

This year, a couple of days after the mammogram, I got a call from the Breast Center. "We need for you to come in and do another mammogram. You know that place we've been watching for the past several years? We just need to take a better look at it."

No. I did not know the "place they've been watching." Somehow everybody forgot to inform me about that. It was a hassle, but I wasn't alarmed. I thought it was probably a technical error. Maybe they hadn't mashed my breast flat enough or they hadn't gotten enough of the surrounding skin squeezed into those mammogram plates. I made an appointment for the following week.

I had the new mammogram done and waited while the radiologist checked the quality of the images. After a few minutes, they led me into another room to have an MRI. The tech sent me back out in the waiting room, but she didn't tell me to get dressed yet. I continued to wait in my little terrycloth robe until everyone who had had their mammograms had gone. Finally, when one of the x-ray technicians told the last woman she could leave, I asked her what exactly what going on.

"We're just waiting for the radiologist to get here," she said. "You can put your clothes back on, though, if you wish."

A tiny shiver of uncertainty ran through me. It couldn't be anything serious, I told myself. There was no need for panic. Yet.

About a half hour later, after I'd been stuck at the Breast Center for about 2.5 hours, they brought me into to see the radiologist. He told me he was sorry for the long wait, but he wanted to be able to talk with me personally. Uh oh.

"Okay," I smiled.

"Come on over here and let me show you," he said. He was sitting behind a massive machine of some kind, so I found my way over there in the dim light.

"Look at this," he said. "I don't know what this is, but it doesn't look right. It's not cancer. This is not cancer, but whatever it is, you should just have them take it out."

I could see the bright spot on the x-ray. I could also see the large black area at the bottom of the MRI image.

"What's that?"

"It doesn't look like cancer. We should just have someone take a look at it and remove it."

That wasn't much of an answer. They told me my next step would be to find a surgeon who could do an actual biopsy. I thanked them for their help, got dressed and went back to work. "At least they don't think it's cancer," I tried to reassure myself. "I'll just get this thing removed and all will be well." It's just going to be a big pain in the ass to find a surgeon, get a referral and ensure that I was meeting all of my health insurance requirements so I could get this paid after I had it done.

I was feeling a little numb. I came back to the office and told a friend, reassuring her that the radiologist said it wasn't cancer. She didn't seem to be terribly impressed with that statement. I could tell she was more worried than I was. That worried me. I went to my office and started the process going, trying to dismiss any concern.