Tuesday, August 21, 2007
Grace
I just hugged someone who betrayed me several years ago. I thanked her for stopping by. I'm not sure whether that means I've moved farther down the road to forgiveness or that I'm not brave enough to continue on with my cold indifference. I could say having cancer makes a difference in one's ability to see past human frailty, but I'm not sure that's true.
Every day, I pray for and work towards forgiveness and the abandonment of rage and hatred. In this particular case, hugging was a manifestation of grace in my life. There's still a small part of me keeping track of the things she did. Maybe someday I'll stop remembering. I'm not quite that strong yet.
Surgery countdown: 7 days
Monday, August 20, 2007
Surgery: Clearly in Sight
M.D. Anderson is clearly in sight now. I'll be leaving Wednesday to ensure I get to an early morning sonogram. Later on, The Beloved Dr. Ross. I'm hoping on this trip, he'll ask me to move in with him so he can take care of me forever. Let's not forget that I have hair and muscle tone now. Anything could happen. (Obviously, I'm hard-pressed to contain my anxiety. Dr. Ross is the perfect antidote.) Friday, I drive back to Austin.
On Monday, I drive back to M.D. Anderson for pre-op consults and an appointment with Dr. Kronowitz early Tuesday morning. Wednesday: Surgery.
I got all new "roll out" materials to their appointed destinations and provided on-site managers with extra copies of required forms. I rock.
For all the lovers of Crazy Land tales, an encounter with Foot Lady for your pleasure. I went downstairs to her office to provide her with the extra forms to take to her supervisors. Guess what we talked about next? Yes! Yes! Her feet! She did not plop her foot on the desk for illustrative purposes, but she did flop it on a nearby chair. Some things simply will not change. Foot Lady's ongoing foot problems is one of them.
The workers' comp company is driving me to distraction. I received a new claim today for an insect bite. I recently allegedly gained the ability to submit claims online. Twice I have tried it, twice it has not worked. I called tech support today, told the guy the problem, and he says, "Well, you got me stumped. I'll have to have someone call you." Great. I've got all the time in the world.
I submitted yet another paper claim, after having wasted a fair amount of time and an enormous amount of patience trying to get the lightening-fast online reporting system to work. I got the letter to the employee printed, but that's as far as I got.
Crazy Land denizens kindly held a Team Ggirl meeting, complete with warm, homemade cookies (of many kinds) and a lovely parting gift. Let us all celebrate my upcoming surgery! My friend the Information Superhighway did lots of shopping and arrived with a whole grab bag of cookies, magazines, crossword puzzles, toiletries...all gifts that were useful and touching. I like to recount the foibles of my co-workers, but my feelings for virtually all of them are quite cordial. Clueless though they may sometimes be, frustrating in the extreme and wildly annoying though they may be, I'm very deeply touched that they care. Not to be cynical, but warm cookies is a Team Ggirl event that's a win-win for everyone and is not necessarily a reflection of how much I've endeared myself to my coworkers.
That completely halted the workers' comp paperwork fiesta, which just means I have to focus on it immediately tomorrow, along with getting my biopsy slides sent to M.D. Anderson. There will be plenty of faxing going on. I got a call on Friday from my dermatologist's office, letting me know they sent the biopsy results, instead of the slides. No one told me that's what they were sending. Nor did they tell me whom to call to arrange it for myself.
I have a late afternoon appointment with the dermatologist tomorrow. I'm sure we'll be covering all of this. That means my last day of Crazy Land will be a short one. That would be great, but my tasks require more time than I may have at my disposal.
I guess that's another antidote to anxiety. Owner asked me today how I got all of the new insurance stuff taken care of. "I worked my ass off." I will be working said ass off again tomorrow. Lots of the workout will be personal, so I don't suppose complaint is in order here.
The upshot is that I may be away for a while from my online friends and my own weblog. Rest assured that all is well and all shall be well and all manner of things shall be well. (Bowing to Julian of Norwich.) I'll see you when it's all over, if not before.
P.S. Sorry for the wholly unimaginative title line. What can I say?Friday, August 17, 2007
Think. Who, me?
Craziness abounds, even over and above my daily sojourn in Crazy Land. Crazy Land continues to spin, though, and I'm definitely caught in its many manifestations of nuttiness-inspired stress. My anxiety about getting everything accomplished before my Wednesday departure is significantly diminished. Nonetheless I'm always aware of the endless shiver of anxiety burrowed under the level of my daily consciousness.
In the middle of conversations, I suddenly notice the lunacy in my voice. The more I try to tame it, the loonier I sound. Very disconcerting. I wish I could preface every interaction with an explanation that I'm soon having my fourth surgery in two years and that I'm therefore virtually unable to think clearly. As a matter of fact, I'm virtually unable to function.
Now and again, it strikes me that, since everyone around me seems to expect me to continue on as usual, I should most certainly be able to do that. Maybe I should be able to, but my mind periodically goes blank. The brain keeps track of pain and it will not be distracted from another imminent physical insult.
"How can you possibly expect me to do anything more than arrive at work and stay there for 8 hours," I think. Actually accomplishing things is simply completely out of the question.
Sometimes there's no choice. I've had the infamous "roll out" to orchestrate, a major coup considering the daunting amount of information not available. It's been a struggle to simply find out how many sites each manager services and how many employees are at each site. Is it any wonder my mind goes blank from time to time? It's a little like a cultural adaptation in this case. Everyone else is in some information-deprived haze. I'm just doing my part to fit in. Now there's a good excuse.
When it rains workers comp claims, it pours. Unfortunately, lately it's been pouring guys who've chosen to not report their work-related injuries for a week or so. The amount of paperwork alone that has to be generated and disseminated wears me out, even when reporting is prompt. When our employees wait to illuminate anyone about their hurties, my work becomes even more time-critical and positively stuffed with paper to be printed, faxed, copied, printed again and mailed to several people.
Last but certainly not least, I've been having serious issues with my dermatologist's office. When I visited, at their insistence, to discuss my diagnosis and treatment, the nurse practitioner was completely useless. No need for treatment, or maybe there is, who knows? Nonetheless, they called to make a six-week follow up visit. I also have an appointment with the doctor herself on Tuesday. To top it all off, I've been unable to have biopsy results successfully sent to Dr. Ross.
See? This is another moment when the mind goes absolutely blank. I have no idea what to do now. The nurse tells me to call the Pathology Lab and arrange it myself. They might have shared that with me when I called last week specifically to have them do that. I can't. The new hill of endless paperwork seems too big to climb at the moment.The noise you hear is my head as I beat it against the wall.
Wednesday, August 15, 2007
Inflammatory Breast Cancer
Important information about inflammatory breast cancer from a woman who knows. She's amazing. Check her out.
Monday, August 13, 2007
Things You Can Be Sure Of
Everything must change
Nothing stays the same
Everyone must change
No one stays the same
The young become the old
And mysteries do unfold
Cause that's the way of time
Nothing and no one goes unchanged
There are not many things in life
You can be sure of
Except rain comes from the clouds
Sun lights up the sky
And hummingbirds do fly
Winter turns to spring
A wounded heart will heal
But never much too soon
Yes everything must change
The young become the old
And mysteries do unfold
Cause that's the way of time
Nothing and no one goes unchanged
There are not many things in life
You can be sure of
Except rain comes from the clouds
Sun lights up the sky
And butterflies do fly
Rain comes from the clouds
Sun lights up the sky
And music
And music
Makes me cry
"Everything Must Change," Bernard Ighner
Time is limited these days. I'm trying to clean up a workers comp mess left by Loathsome, "roll out" a new workers comp insurance program and forestall the complete rewriting of the employee manual. Patience is also limited. So is emotional stability.
I cry at least four times a day every day. Today has actually been a really good day. It's 2:00 p.m. and I've only cried once. Crying is impromptu, it's always a surprise. Just thinking about crying can make me cry. I'm loads of fun to be with.
Every once in a while, the thought breaks through, "I'm having surgery on the 29th." That's when things really start to get out of hand. Every surgery is cause for new terror, if only because every surgery still hurts. I never cry when I see it coming. I do, however, freeze for a moment or two and wish there were some way to escape this life I've been assigned. The thought of another surgery is dumbfounding.
I'm out of sorts these days. Everything seems bleak. The future seems not worth living. I wonder why I tried so hard to stay alive. What exactly did I have in mind? Did I believe things will someday improve in my life in any meaningful way? If that's what I thought, I can't imagine why I believed it.
I'm angry at the universe. I keep thinking back, wondering what it was exactly that I did to deserve my impossibly difficult life. It's not just the breast cancer. It's the years and years of physical, emotional and sexual abuse. It's the rape. It's the suicide. It's the job I hate that just won't stop. No matter what, I have to be here. All of those things seem beyond the boundaries of good taste when heaped upon one small person who's made a lifetime career of not passing along the violence and pain.
I'm a good person, a gentle person, a person with enormous compassion. As if that counts for anything. I'm sure there's some purpose to all of this accumulated suffering, but lately I'll be damned if I can see what it might be. Oh. I know. I've been sent the plague of my existence to create the possibility for gentleness and compassion. It's a mighty big price tag and one that I don't feel much inclined these days to continue to pay.
Last night, I watched a program on the travel channel called "Jeff Irwin Inside Alaska," or something like that. The vast, primeval spaces reminded me of why I don't matter. As I watched bears tearing apart salmon they'd just caught in the river, I kept thinking, "Something dies so that something else may live." That seemed comforting somehow.
Over the weekend, I though a lot about the gift of seeing the end in advance. My life seems broken beyond repair, my body wounded forever, my mind diminished. The changes are irrevocable. It's the coming attractions, folks.
Unless we've somehow managed to find a quick end, death invites us to leave in tiny increments. We lose a little of ourselves, a little of our joy (assuming we ever had any) moment by moment. Alaskan brown bears die because they have cavities in their teeth. They suffer, dying bit by bit. We do, too. Right now it's not so much the leaving that bothers me as the slow, painful journey to get there.
Day after day. I get up and come to work. My body hurts. I "roll out" workers comp insurance. I cry about the pathos of the universe. I fill out forms reporting an injury. I rage against the injustice of the universe. I proofread invoices and wonder when my damn copies are going to be ready to be picked up at the local FedEx Kinko's.
When I look at it that way, it makes me laugh. I'm feeling dramatic today. It's nothing a good surgery won't cure, though.
Thursday, August 02, 2007
What's the Diagnosis, Anyway?
Morphea is an extremely rare type of scleroderma, occurring in approximately 25 in one million people per year. It's characterized by red or purple splotches that gradually turn whitish. I assure you that if I'd had red or purple splotches running down either side of my spine, I would definitely have noticed. Unlike generalized scleroderma, it will not kill me. That's a plus. No one knows what causes it. It's not hereditary.
I don't even want to talk about morpheaform basal cell cancer. Will that kill me? Oh yeah. You can see why I'd prefer the first diagnosis.
I've been searching for information, obsessing, being absolutely crazy about it. Everyone assures me they would be, too, given my breast cancer diagnosis. Originally, my dermatologist had scheduled an appointment for me on August 21 to discuss the diagnosis and treatment options. This is after they rather frantically tracked me down to tell me the doctor wished to see me. It's not like I didn't make myself very available. There are two numbers where I can be reached and both have voice mail options.
I'm supposed to see Dr. Ross on the 23rd of August, so I contacted him and I'm having biopsy slides sent for his review. I started to think that was a really stupid idea and that I should just cancel the message I left asking for instructions on how to do that. My mother, my therapist, my co-workers all insisted that I shouldn't have to wait that long to find out what's going on. Furthermore, if biopsy results aren't examined by a pathologist at M.D. Anderson in advance, Dr. Ross will have no ability to make a reliable diagnosis. You know how I trust this man, so even if it's totally crazy and stupid, it will at least ease my mind to have his opinion.
Meanwhile, physical therapy continues. There are numerous places on my body, both inside and outside that have scar tissue build-up that we're trying to break down. I was surprised to find out that I even have scar tissue running from my groin to my new girl from the drainage tubes I had to have after reconstruction. Obviously, my upcoming surgery will only create more scar tissue.
Breaking up scar tissue is painful. Now there's a surprise. Has anything in the past two years not been painful? Hell no. It's all relative, though, and it's far less painful than the needles-in-the-breast episode and the whole reconstruction (so far) ordeal.
I have exercises to do every night to get my lymphatic system up and running. Then I have to use a hand-held massager to work away at that scar tissue. That's in addition to the twice weekly manual manipulation with the physical therapist.
It feels like virtually every working moment is dedicated to some sort of body maintenance or bodily healing or trying to get my records sent here and there or trying to get an earlier appointment. I could go on and on.
But I won't. I spend so much time now in my weblogs cataloging the latest events that I never get around to how I'm feeling inside these days. I guess there's not much point in examining it. I'm emotionally ragged and exhausted. I'm so stressed out that I'm barely functional. Maybe tomorrow I can think about that a little more and feel it a little more.
Right now, I'm going home to eat something and work out to manage my stress level. Manage. There's a laugh. There's no managing to be done; I'm just trying to get through this. I don't think that counts as actually coming to terms with anything.
With any luck, I'll have enough time tomorrow in between resolving more medical issues to chronicle the latest emotional debacle.
Wednesday, August 01, 2007
Things Can Always Get Worse, Part 57
Note: I attempted to post this yesterday, but it disappeared into cyberspace.
I got back from physical therapy a few minutes ago to find a message from my dermatologist's office. You know, I'd already decided that everything was fine and I'd just have stitches from the biopsy taken out text week and be on my way. Wrong again. Something is wrong. The message said they'd been trying to get in touch with me and want to set up an appointment to discuss my "diagnosis and treatment."
You know they're not going to tell me anything over the phone. They never tell you anything over the phone. I don't think it's skin cancer because I've never heard of skin cancer manifesting that way before.
Nonetheless. Things can always get worse. Can I put that on my headstone? I'd prefer to be cremated, but maybe they could just put a headstone in some random, unfilled corner of a cemetery. It wouldn't have to be big, obviously.
If not "Things can always get worse," then I'm considering just "Fuck you."
Keep you posted on the fun new developments.
Tuesday, July 31, 2007
Skin Biopsy Results
I got back from physical therapy a few minutes ago to find a message from my dermatologist's office. You know, I'd already decided that everything was fine and I'd just have stitches from the biopsy taken out text week and be on my way. Wrong again. Something is wrong. The message said they'd been trying to get in touch with me and want to set up an appointment to discuss my "diagnosis and treatment."
You know they're not going to tell me anything over the phone. They never tell you anything over the phone. I don't think it's skin cancer because I've never heard of skin cancer manifesting that way before.
Nonetheless. Things can always get worse. Can I put that on my headstone? I'd prefer to be cremated, but maybe they could just put a headstone in some random, unfilled corner of a cemetery. It wouldn't have to be big, obviously.
If not "Things can always get worse," then I'm considering just "Fuck you."
Keep you posted on the fun new developments.
Monday, July 23, 2007
Skin Biopsy and Self Injury
I had an appointment with my radiation oncologist on Thursday morning. He diagnosed the pain and swelling as localized lymphedema. I'd considered that possibility before, but my several sources of information only mentioned swelling down the arm, not under the arm. I don't understand why sometimes it's localized and sometimes it isn't. He said that physical therapy might be very helpful and referred me to a clinic here in town. They're supposed to contact me sometime this week. I'm enormously relieved that it's nothing more serious, although lymphedema, untreated, can produce disastrous results. It's also really unattractive.
Thursday evening I fell four times. Four times. That's excessive, even for me. I'm not sure why I fell the first two times, although I think all of them may have been a result of having my eyes dilated earlier in the day. I had an opthamologist check the progress of my macular degeneration. (It didn't get any worse--Yay!) It's possible that, even though it seemed my vision was back to normal, there may have been some depth perception distortion.
Anyway, the first couple of times I fell I was just walking around in my house. I didn't sustain any injuries. The third time, I misjudged the two steps down from my bedroom into the living room, slipped and sprained my ankle. Within about an hour, I was going through the den to let Andy the Demon Dog outside, fell and bruised my knee. Both the huskies' crates are in the den, but his is close to the path to the back door. I usually keep the crate door cracked so he can go in if he wishes. I've had disastrous encounters before with the wide-open crate door and I'm actually a quick study when it comes to ways to prevent collisions. I've had a lifetime of practice.
I guess Hubby left the crate door wide open and I didn't turn the lights on in the den. Too much time and trouble to turn on lights, you know. I slammed into the door with my knee and just collapsed on the floor. Luckily, the knee wasn't sprained, too.
Earlier in the evening, I accidentally whacked my head against a cabinet door. I have a bruise on my nose and forehead. They're not bad; they just look like maybe I'm not the most fastidious person in the world. My husband thinks I'm trying to get him arrested for assault. (Note I did not say "domestic assault." I think it minimizes the crime.) The most amazing news? I did not go to work. I always go to work with sprained ankles. Yes, I have them rather frequently. I think it runs in the family; my mom's ankles collapse for no apparent reason.
Today, I had my annual skin cancer check with my dermatologist. She found an area on my lower back that looked a little weird. It wasn't a mole or anything like that; it was a gray area that spread across my hips. We did a biopsy; results expected within 3 to 5 days. I'll have to have stitches taken out in a couple of weeks.
The great news here is that if it turns out to be something scary, my beloved Dr. Ross is an accomplished skin cancer surgeon. As a matter of fact, he consults throughout the country on difficult cases. Lucky me. Have I mentioned lately how much I love him?
Last Wednesday was Hubby's birthday. I was confused. I thought it was Thursday. Good move. I don't know--I was confused about the date all last week. Who am I kidding? I never know what day it is. I mean I'm not even sure if it's Tuesday or Thursday. It's either the monotony of daily life or the lingering effects of chemotherapy. I like the latter explanation later.
I'd already bought a gift for Hubby, so I was clear on that count. However, I didn't wish him a happy birthday until he pointed out to me that I should have. I noted that he forgot our wedding anniversary last year. We're even now.
Aside from giving you a blow by blow account of the numbers of loads of laundry I did this weekend, that about wraps it up. How timely. It's only about ten minutes before I get to go home. I'm working on being much more entertaining in the days to come, so don't give up on me now.
Wednesday, July 18, 2007
Distractions
"Her mind lives tidily, apart From cold and noise and pain, And bolts the door against her heart, Out wailing in the rain." ~ Dorothy Parker
I just ate an apple without washing it. Do you suppose it will kill me? Big ironic smile here. My dark sense of humor has grown much darker the past couple of years.
I finally broke down and called the radiation oncology office yesterday. They were busy, of course, and the recording suggested I leave my name, number and what hell I was calling about. I did that. Have I heard anything? Hell no. With the help and encouragement of my online friends, I overcame my fear of seeming like a crazy hypochondriac and called. Thanks so much for getting right back with me about the pain and swelling, cancer guys. I guess they figure those two things don't necessarily mean anything that will result in imminent death, so no rush.
I can't recall whether the oncology office recording said they'd get back to me within 24 business hours. That's the usual standard these days. It's been 24 business hours now. Maybe I'll have to call back, just to check. I don't want to miss the opportunity to give people an enormous amount of trouble about breaking the 24 hour rule.I'm generally such an empathetic personality that I'm willing to cut people an enormous amount of slack. However, woe be to those who overestimate my level of good will. Ask the folks at Holiday Inn. They can attest to that fact.
As far as I can tell, I'm not overcome with anxiety anymore. God only knows what's going on beneath the level of ordinary consciousness, though. Nothing like having a brain that walls itself off automatically to protect against unwanted emotion. Generally speaking, though, it requires that I put some active effort into it.
There are all kinds of thoughts and fears that I examine, then put aside into little individual compartments in my head. "I'll just get back to this later," I think. It's highly conducive to the ability to function, no matter what. Thank you, crappy childhood. Of course, it's not the most mentally healthy way to deal with things, I've been told.
From time to time, when I talk about moving problems over to their own little room in my head, my therapist asks me how I do that. I have no idea. I do know that there have been times when keeping things in those compartments requires visualizing many locks and an occasional barricade. I've been able to count on the locks and barricades when it's absolutely necessary.
All of that is a clearly pragmatic decision to put things aside until later. As I mentioned before, sometimes my brain kindly moves fear and anxiety directly to secret places without any effort whatsoever on my part. Sooner or later, though, the gates somehow open and I'm flooded with the memories, thoughts or emotions that have been hidden from me. The surprise is invariably unpleasant.
I think everyone does that to some extent. There are all kinds of nasty things floating around in what Freud would have called the unconscious. I'm not a big fan of Freud's view of the world, but when he's right, he's right. Carl Jung (among others) agreed. He's much more palatable to me.
For instance, I suspect that each of us harbors ill-will towards others, even though we may never perceive it. We might vehemently deny it, as a matter of fact. When I clearly see into what Zen Buddhists call "Hatred Mind," I always find some previously buried hatred, resentment or anger. It requires "opening the hand of thought" to find Hatred Mind and what lies within it. I try to be benevolent towards everyone, but I'm not seduced by that desire.
Freud would say there are shameful desires, primeval fear, unassailable rage that we're incapable of confronting because they pose unspeakable danger to our psychic wholeness. It's sort of like the mind-splintering direct encounter with the divine, alluded to in every spiritual tradition of which I'm aware. The infinite, though blindingly loving, is too much for us to bear. Wholeness can lead to madness just as surely.
Notice how I veered off into theoretical exploration? That's my brain offering up distraction and solace. Every once in a while, I can see it as it happens. It no longer matters to me, at this moment, whether the sacred 24 hour rule has been violated. I'm still stuck on the idea of hatred mind and the mystical meeting of humanity with infinite love.
Tuesday, July 17, 2007
The Outskirts of Consciousness
"I've been trying to get as far away from myself as I can," "Things Have Changed," Bob Dylan
I tried calling in sick to Life. "Hello, Life? I'm not myself today, so I won't be coming in. I'm sure I'll be back tomorrow." Life does not accept those kinds of calls. I'm reduced to living on the outskirts of consciousness, tamping everything down and floating around the edges where nothing serious lives.
I'd love to take a vacation from myself. I get that old claustrophobic feeling I had after my last surgery. If only I could rip some part of myself open and step out of this body for a while. Or if I could just scream long enough, maybe all of the anxiety would drain away.
I've written several posts and abandoned them or saved them for some day when I can concentrate. I haven't been visiting my friends online. It feels like half of my brain is dead. Maybe more than half. I spend my Crazy Land days trying to work on the database, but it all seems so complex and unfathomable. I haven't accomplished much.
I've been crying at the smallest of things. Even writing that sentence makes me teary. I become enraged at unpredictable moments. When I'm not enraged, everything irritates me. So, let's see...crying, then being enraged, then being irritated, then back to crying with a little irritation mixed in. I've got my own private Crazy Land going on in my head. No one pays me for showing up every day, though.
My mother seems to call me every 15 minutes. I love my mom, but get off the damn phone already. I had a psychobitch meltdown with Hubby yesterday. I'm sure he'd like to get away from me almost as much as I would. Crazy Land is easy. I'm in my office where I pose no danger to anyone else. If I don't see them, I don't yell at them. I don't crumple up into a little ball and cry at the copier. I don't expect them to understand where I'm living these days.
Most of the time, though, I'm able to keep it together. I chat with people, I read, I listen to music. I do not talk about fear. I try not to engage fear on any level. My inner debate continues: Am I being crazy about the mass under my arm (and the pain and swelling) or does it make complete sense that it terrifies me? The question arises regularly and just as regularly, I push it away.
It's one of those times, I suppose, when no one can help me out of this. Why don't I go to see my radiation oncologist, people ask me. I don't know. I don't want to. That would require that I allow fear a free hand in my consciousness. Maybe I just don't really want to know what's going on. Maybe it's stupid to even think I need to see him. If I see him, won't he just tell me he doesn't know what's causing the problems, that I should give my oncologist a call? Or maybe he'd tell me to get over it. Hell, I can tell myself to get over it without having to shell out the $15 copay. Maybe if I just wait a little while longer and keep the panic corralled, my logical brain can get control over things and I won't have to go at all.
Anguished. That's the word. If I had to sum up everything going on inside me, that would be it. Feeling it is almost more than I can bear. As I type these words, there's a voice inside reminding me that my problems are small compared to most people's. There's a whole lot of suffering going on in the world.
I either need to get some greater perspective on my problems or open my heart and mind to the anguish. I should observe the fear and rage and sadness. I should note how they feel to this physical body. Mindfulness meditation. Maybe I can get around to that later on. Not now, though. Right now, I'm going to summon the energy to push it all away again.Wednesday, July 11, 2007
Ignorance and Insensitivity
Warning: If profanity offends you, stop now.
Want to know what offends me? Continuing conversations with my co-workers about Elizabeth Edwards. Not only does it offend me, it enrages me. The owner of my company just called me to advise me again that he doesn't believe Elizabeth Edwards should be out campaigning for her husband.
I muzzled my rage and told him, in a reasonable tone of voice, that I've given her circumstances a great deal of thought. I don't judge other people trying to endure cancer, especially when it's clear that ultimately they will not survive. Even if it seems like they will survive, no one and I mean no one, has the right to make those judgments. Especially when you have not experienced the disease yourself. I don't mean just reading about it or watching documentaries about it or even knowing someone who has it. When you have walked the walk, then and only then, do you have the smallest scintilla of right to criticize others who are just trying to get through the fucking day. How ever they can.
"Well, I just think it's a matter of priorities. They have children, you know." he said.
No. Really? They have children? What would you have her do, sit around her house all day, waiting to die while her children crumble? You don't know. Maybe you would do it differently, but here again, you don't have fucking cancer. So shut up.
What would I do if I knew with certainty that death by cancer was going to severely limit my time with my children? I have no idea. I know I used to have a lot of ideas about how to get through the struggle, even shortly after my diagnosis. You don't know until you get there. I don't know what I would do. How can so many people in my office be so deluded as to think they know? Well, aside from being judgmental assholes, of course.
If you don't like John Edwards, I don't give a fuck. Campaign against him. Vote against him. I don't have a horse in this race. Don't call me up to argue with me about his "arrogant campaign tactics." Allow me to repeat myself: I don't give a happy goddamn about John Edwards. He doesn't have a snowball's chance in hell of winning the nomination, in my opinion. People do not contribute to political campaigns out of pity, in my opinion. (This is politics--anyone can have an opinion as to the mechanics and outcomes of political campaigns.) Who the hell are those people? Find some for me, provide me with some reputable sources of information on that score and I might be willing to change my mind. That really isn't the point. Judging someone who's dying of breast cancer, who's going to endure an enormous amount of pain (including the certainty that your children, young and adult, will have to live their lives without their mother--that's the point.
Furthermore, could you just stop talking to me about this? I'm emotionally ravaged by two years of doing whatever I had to do to get through it, sometimes sixty seconds at a time, because that's all I could manage. I have this weird thing going on under my arm. Everyone here knows that and, even though I don't wander around with a worried look on my face, cut me some fucking slack, could you? I expend an enormous amount of energy every day trying to keep my own internal debate at bay. "Oh of course it's fine. Silly me," alternating with, "Fuck! This is how it happened the first time. Why is there pain and swelling? Why is there that hard mass?" I do not have the extra energy to stuff all of that back down just because my co-workers think it's their right and duty to express their ignorant opinions. To me. If you'd like to talk about it, if you think you must, talk to someone else.
I've asked that people not talk to me about it. I've asked politely and patiently. I've told them it makes me anxious. I've walked away when they ignore me. I sincerely hope that no one here (or anywhere) has to find out what it feels like to actually experience this disease. In these circumstances, I say that with a certain amount of bitterness. When and if my esteemed co-workers wake up to their own cancer diagnosis, they can come to their own conclusions about the behavior of everyone else with the diagnosis.
Until then, fuck off.
Thursday, July 05, 2007
My Own Inner Cancer Survivor
Then everyone would leave the room and this huge machine would circle around me like a vulture. It would radiate for a while here, move, and radiate in another place. It usually went on for about half an hour. The machine made a lot of noise and, from my vantage point, I could see it internally repositioning itself (by technician-controlled computer) . Blades inside made a whirling sound as they moved. I started to have burns before many days passed. Big deal. I'd just finished up chemo. A few burns meant nothing to me.
As I lay there, I'd sometimes contemplate my radiation oncologist's explanations about the need for precision. If I moved during the radiation treatment (I love that word, "treatment"), it could radiate my lungs and/or heart because of the size of the area and its proximity to those organs. Sometimes I didn't think at all, drifting still in my poisonous haze. I just lay there and felt how much my body hurt. When it was over, I smiled and told the techs I'd see them tomorrow. I'd get dressed and go back to work. It makes me sad to think about that time.
I got unaccountably attached to my radiation techs, a young man and woman. We never talked much. I'd say hello and ask how they were. They'd answer and ask how I was. They knew how I was. I was dazed with pain, beaten down and generally felt like shit. I looked really good, too. It was nice that they asked, anyway.
Those techs were two more strangers I became comfortable with pulling and pushing my body around. At that point, it didn't really seem much like my body anyway. On my last day, the young woman tech rushed out and stood beside the door with a handful of confetti. As I walked out, she threw it up into the air. I actually hugged her. We hadn't had that kind of relationship, but I suppose all cancer treatment relationships become intense, if only for the patient. Actually, I think it's probably a little intense for the care providers, too. However, they need to protect themselves emotionally, of course, in order to survive the jobs they do. When I think about my own two radiation technicians, I'm still grateful and marvel at their gentleness. I would hug them both if I had a chance.
My own personal victory: I did what I could to liberate my fellow cancer patients by not wearing my wig. I was completely bald, of course, because I'd just finished chemo. By the time radiation was over, I was beginning to have a little baby bird fuzz. There was another young woman receiving radiation treatment for breast cancer whose appointment was always just after mine. After seeing me with my naked head for a couple of days, she started showing up without her wig. She told my mom one day, while I lay on that table in the radiation room, that she had never gone anywhere without her wig. Even her husband had never seen her without it. I gave her the courage.
I had begun to feel that, by wearing a wig, I was giving in to a sense of shame, almost. I was bald because I was trying to survive a terrible disease. Why would I hide that? I had lost all pretense to vanity a long time before my hair completely went away. Wearing a wig became more a gesture of protection for other people than for me. And, in fact, when I started coming to work without my wig, people were troubled. I told them that I'd gotten used to it and they would, too. I have no idea if they ever did, of course.
I decided that being bald was a profound symbol of exactly how difficult my life had become. It became a statement of pride. This is how much I can endure. This is how committed I am to staying alive. I not only have enough inner strength to keep going, I have enough strength to let you see how I've suffered. Furthermore, fuck you, cancer.
We all get through it how ever we can, though. I would never, ever judge another cancer patient for making a different decision about it. I think everyone should be as comfortable as they can be, in every possible way. If a scarf or a wig helps a little, then hallelujah. It's important to celebrate your Inner Cancer Survivor somehow, though, if you have enough energy. My way didn't take much of that.
I have my six-month check up with my radiation oncologist soon. We'll be having those little visits for the next five years. Sometimes it feels like all of it will never end, especially as I mark time until the next ultrasound.
Radiation ended, though. A year ago today. Here's to my own Inner Cancer Survivor.
Friday, June 29, 2007
The Object Of My Desire
I spend a lot of time fantasizing about my oncology surgeon. It is so not about how he looks. The men (or boys, really) I dated before I met my husband were all good looking, as is Hubby. I was exactly that shallow. On the other hand, if they couldn't keep up intellectually, they were banished in short order. I didn't care much for emotional accessibility, either. As a matter of fact, expecting me to be loving and open counted as a serious liability. Hubby is the only man with whom I've ever been truly vulnerable.
Back to the object of my desire. He's middle-aged, a little paunchy, seriously balding and he wears very thick glasses. I look around and see men every day who are far more attractive, but arouse absolutely no libidinal interest. It's that ineffable something. It's sexual attraction that arises from a primitive part of my brain. Maybe it's those expensive, heavily starched white shirts. (Although I see a lot of those around, too.) Or maybe it's the profound intimacy that develops when someone cuts off one of your breasts and calls you sweetheart, anyway.
My need to fuel this harmless obsession has resulted in some unpleasant consequences. I googled him, of course. (Of course!) Unfortunately, it led me to an article he published a couple of years ago in a medical journal. It impressed on me the seriousness of my illness. I hate it when I come across things that clarify the dangerous extent of my breast cancer.
A couple of weeks ago, I was editing some old entries from when I was first diagnosed. I thought I'd share them with Hubby, since my online friends are the only people who've ever been privy to the daily grind of that period in my life. The unvarnished truth can be emotionally devastating for loved ones. Hubby already seemed very fragile; helping him get through it would have forced me to really confront my situation. It would also have depleted my own energy reserves critical to survival. (See synapse management above.)
Now, I'd like to offer him the best of my literary self in addition to authenticity. In editing those posts, it became clear I'd forgotten the things my surgeon told me after the sentinel lymph node biopsy. It took my breath away. I have a truly world class ability to deny reality when it's too harrowing.
I try to put those things out of my mind, though. I get right back to obsessing about my surgeon. I know what's important. It's that delicate balance that must be preserved. If he's the necessary vehicle for that, I'll step into it wholeheartedly. I just need to be careful about knowing too much about exactly what he does.
Maybe if I Yahoo him, I'll be able to entertain myself for the rest of my work day. If not, I'll have to simply imagine the beauty of what lays beneath his starched white shirt.
Tuesday, June 26, 2007
All Manner Of Things Shall Be Well
Today I planned to get around to checking in with all of my online blogging friends. I always miss sharing in their daily lives when I have to be gone--usually because of a trip to deal with cancer in one way or another. I may not get around to that, after all.
I'm crying now. In my office. At the mercy of anyone in Crazy Land who happens to knock on my door. I do not wish for them to see me cry. It's too personal to explain and there is no consolation to be found. Certainly not here, anyway. Actually, I'd love to explain it to myself, but crying is only crying. No explanation necessary.
It feels so silly to be afraid. Is there something wrong in the new girl? Probably not. My mom thinks everything is okay. I should just banish the fear and rest in the thought that most likely all is well. Right? I'm almost certain everything is fine. Why would I choose to believe otherwise?
On the other hand, having once been overly optimistic, it's well nigh impossible to exorcise that anxiety gnawing around the edges of my consciousness. Two summers ago, I thought we were just going to have a look around, maybe remove a benign tumor and get on with things. Then I believed Dr. Ross would perform a little lumpectomy or a big lumpectomy and I'd go on my merry way. Obviously, that didn't happen.
Money Man's daughter poked her head in my office a while ago and, though I tried to pull myself together, I'm a messy crier. My eyes get puffy immediately and my nose turns red. Very, very attractive, I assure you. That's when I decided to take a little trip next door and get over myself. At least there I could cry noisily if it came to that. It did. But I'm back now.
A few seconds ago, Crazy Employee, who engaged in some egregious back-stabbing behavior last week, knocked on my door and made some ridiculous excuse for entering my office. If I wanted chocolate donuts, bitch, I would go to the receptionist's desk to get them. I do not wish to share anything with her. I'm insulted that she would think otherwise.
In what's come to be the Official GGirl Crying Building, there is an abandoned plant. I've been trying to get someone to take care of it for a long time and now it's dying. That touched off another round of crying and, as I sit here, tears are welling up again. Goddamn it. I'm going to try to find a way to get some water to the poor thing and, in the meantime, I slanted the blinds so it could get more light. I just need to find a big enough container to take some water to it; it's a very large plant and needs more than a cupful or so.
Back to the matter at hand, be afraid or not? Maybe I don't have any choice and I should just go with whatever the moment brings. Oh yeah. That was supposed to be one of those lessons I learned from having breast cancer. Being in the moment is being completely alive.
I tell everyone that I wish to live until I die. When I'm sitting on the floor next door, crying about a dying plant, that is exactly living until I die. Yesterday I was reminded of a quote from a Medieval mystic named Julian of Norwich. "All things shall be well. And all manner of things shall be well." They shall.
In the meantime, I may be vying for the office nickname, "Crazy Employee." I'll have to think of a new name for her, though. The possibilities are endless. I'm officially taking suggestions, but I have dibs on "Back-stabbing Bitch." I'll get back to debating fear later. I've got my priorities straight, you know, because all things most certainly shall be well.Friday, June 22, 2007
Same Song, Different Verse
I got back from M.D. Anderson several hours ago. The good news: hotel was fine, water was hot, no one suggested that I might be feeble minded. The other up side: I saw my beloved Dr. Ross. One of my online friends asks what's special about my surgeon. Excellent question, which I'll answer later.
The mammogram process was terrifying. We did the usual four x-rays, they sent me to wait in a little room to make sure they hadn't missed an area. I was the only person there. After a period of time, they came to get me again. No big deal, I thought. We just missed something; that's not unusual at all.
Oh no. We had to do a different kind of mammogram because they needed to take a closer look (they being the radiologist and person who did the mammogram) at something. Hand crank makes a comeback. I was sent to sit in the little room again. Alone. Time passed and passed and passed.
Finally, after about 15-20 minutes of waiting, the mammogram person came to get me to take even more x-rays. Now I'm really afraid. That's how it started the last time. Picture, pictures, wait, wait, then bad, bad news. "This must be making you really afraid," the mammogram person said. "Yes," I answered. No response. She put the x-rays on a light board, told me to come over and pointed out several areas they were concerned about. Great. That also happened the last time.
More hand crank action and some highly unusual poses that I had to hold, without breathing of course. Back to the tiny room. As I waited, I became more and more afraid. I was almost ready to cry when she came back and said they looked okay. Too late. That's what the radiologist told me two years ago. Then I showed up at my local surgeon's office where I found out that things weren't fine, after all.
I was still terrified while I waited for Dr. Ross. He came in and asked about any problems, then reassured me about the right breast. I could relax enough to tell him they took my oncologist away from me. I asked him if he was going away, too. "I'll do anything you want me to do." Okay. I was feeling better enough to think, "Oh, really? How about I move in with you and we spend the rest of our lives together?" Instead, I said, "Please don't go away. You're my guy. I trust you. I know you're going to take care of me."
Dr. Ross then started examining the new girl and found a hard place where I had a lot of radiation last summer. He was concerned about it and wants to have a better look. A mammogram? Ultra sound? I don't know. "See?" I said, "You're my guy. I know you'll take care of me."
We scheduled another visit in a month, I think. Or in August. When your oncology surgeon registers concern, there's a part of your brain that shuts down. Or at least that's my experience. Off he went to fetch his appointment schedule. He wrote me down for whatever date it is and gave me a hug He's a very, very compassionate man.
Now, on to why he's so special. He saved my life. I had an unusual form of breast cancer that manifested itself in unusual ways. He found it. He told me. Then Dr. Ross took care of me. He's the best surgeon in one of the best cancer hospitals in the world. He's very gentle and cares about all of his patients as individual human beings who deserve kindness and support. He gave me hugs. Dr. Ross knows how terrifying any kind of cancer diagnosis is (he also specializes in skin cancer surgery).
Here's the final and saddest reason why I have such a huge crush. He's the first man I've ever known who's taken care of me. I can count on him. That's remarkably special.
Thanks for all of the prayers and good wishes. They help, you know, both emotionally and physically. That helps to take care of me, too. I have to rest now. See you on Monday.
Tuesday, June 19, 2007
The Hand Crank vs. Crazy Land
Okay, here's the deal. Tomorrow morning, I will take my little Andy to be boarded, then I'm going to drive four hours to get to Houston. Thursday, I have a bone scan and a mammogram. The bone scan is no big deal. There's no pain involved in that.
As for the mammogram, my insurance company should be pleased that I am receiving the best screening possible. They manage to scrunch all of the skin and muscle from my neck to my bellybutton in between what I think of as the jaws of death. We spend a good twenty or thirty minutes getting me all lined up and making the plates capture the skin and muscle. Then, my friends, the hand crank comes into play. All of that bodily mass will eventually be compressed into a quarter of an inch. I swear.
After all of that, I'll be sitting around waiting for my beloved oncology surgeon. At least 45 minutes at best will be spent sitting in a hospital gown three times my size in a tiny, freezing little room. Given the size issue, I don't even know why they give me the gown thing. It's fastened in front and, having only two ties, I'm virtually naked from the waist up. I used to expend a considerable amount of energy trying to keep myself covered up in case one of the many nurses or Fellows or assistants show up. Going down the hall to the bathroom was always interesting. I'm shameless at this point. So many absolute strangers have not only looked, but touched extremely private parts of my body that I don't bother with modesty.
On mammogram days, I usually get back to my hotel room around 9:00 p.m., exhausted and starving. They make it impossible to actually eat anything substantial in a day always positively action-packed with waiting. In spite of all of this, it seems infinitely preferable to another day in Crazy Land. I know it will still be there waiting for me on Monday. But for the following three days, I can occupy my thoughts with more important things than back-stabbing attempts by co-workers, random rage attacks by others and my own weariness with it all. Bring on the hand crank. What a relief it will be. See you on Monday.
Monday, June 18, 2007
On The Other Hand....
Okay, well maybe not an up side. More like random thoughts that aren't quite so glum.
I'm back to some semblance of my old workout schedule. The good news: there really is muscle memory! The butt is making a comeback. The triceps--not so much. They need lots and lots of work. The rest of me is getting more muscular and my stamina improves every day. It was vitally important to get the muscle tone back to some extent so I can resume flirting with my oncology surgeon. That's such an odd concept--trying to flirt with a guy who regularly makes me lie down and then touches my breast (and now the new girl, I suppose). I have hair now, though. That's got to be an advantage. Yes, I will leave my husband. In a heart beat. Or a breast check, whichever.
I had a compliment from one of our contract employees last week. I always call him "The Ladies Man," although he's known by his peers as Killer, a tribute to his lady killer days. I've known him for years now, but he's still a looker. Killer told the Superhighway that I'm looking very sexy. I naturally thought she was making this up as a tonic to my poor physical self-esteem. Now I'm not sure. She looked pretty sincere. That used to be a thing that irritated the hell out of me--I always wished men would pay less attention to how I looked than how the brain worked. Now? It made my week.
I passed the compliment on to Hubby. Interesting how that made him actually see me again. After 30 years, in at least a couple of which I looked like absolute hell, we tend to take each other's positive attributes for granted. I don't care. I'd still leave him for surgeon noted above.
Should there be another post? Yes, I think there should. I write these long, verbose posts and I'm always afraid they're too long. They may become tedious. So next topic. I'm making up for my absence later this week. I can always tell myself that, anyway.Another Month, Another Trip
I've got a trip to M.D. Anderson this week...it's never-ending. Bone scan and a visit with the ever lovely Dr. Ross. Even my great affection for him isn't quite a panacea for the stress extravaganza. I woke up four times last night. It never fails. Even when I'm not thinking about, my brain is working overtime with anxiety.
I think I get the month of July off, except for a visit to check on the progress of my macular degeneration. I fear the news will not be good because the eyesight in my left eye (the one most affected by the disease) has deteriorated. I can still see the grid I use to check md's progress, so that's good news. I'm tired of doctors and I'm tired of bad news.
In August, I have a follow-up with my radiation oncologist. He's here in town, so that's something, I suppose. August 29 is my next (and, I hope final) surgery.
In September, it starts all over again. I'll have to schedule a visit with my medical oncologist. I'll never forget the last visit after chemo ended. I told my doctor that I really like him, but I'd be thrilled to not see him again. Oh no, he told me, you'll be seeing me for the next five years, at least. Four times a year. My heart sank.
There will never be an end to this, unless they find a cure. I have my very own M.D. Anderson page on the web. A dubious distinction. It could be worse, though. As far as we know, there's no cause for concern. The Watcher notes the one-cell rule.Wednesday, June 06, 2007
Just Another Bad Day
I'm having a bad day today, sitting in my office crying. Why? Well who the hell knows. I actually had to leave a minute ago and spend some time in the other building, sobbing. Then I walked around the block to make sure I wasn't carrying the Dreaded Fleas into the main building.
Today I guess I'm thinking of everything I've lost. It wasn't just a breast, it wasn't just a childhood, it wasn't even innocence. It wasn't any of those individual things. I'm not sure I can even enumerate them. And, after all, what would be the point of that? Sometimes hope seems so far away I have no idea of how I'll reach it, or if I ever will. Hope for what? If I knew, I'd be working hard to get it.
It's a bad day. That's all. One of the great things that breast cancer taught me is that it's just fine to cry. Furthermore, I couldn't stop it even if I wanted to. And I really, really want to. I'm a person who just gets up every day, hoping to learn whatever lessons the universe has to teach me, and I get on with things. Buck up. Get a grip. Move on.
I'm more composed now. Thanks for listening. I am now officially bucking up. I could do that a lot faster if I had chocolate, though.