Amazon on the mend...

This is certainly not the first post written on Percocet, but it might be the first on so much! (That is what is called a disclaimer.) Many thanks for the outpouring of support before, during and after surgery. I am home now being looked after by Dr. Margaret and Nurse Butters. Desperately glad to be in my own space and pain-free. Steve is in Houston, so Devra and my Mom came with me to the city. Steve will take over from Margaret tomorrow. So long as I feel this good, I'll need very little looking after, but it's nice to have the company. I'm really glad we thought of (and could afford) staying in a hotel the night before surgery. Mom and Dad generously paid for this, as well as meals and chair massages the evening before...bliss! The "scheduling administrator" was supposed to call sometime after 2 with time of surgery the next day. At 6:30, I got a voicemail saying he had been "trying to reach me to give me a time." Do people really think they can get away with that in the age of cellphones? Had he been trying, I would have known. When I called back 10 minutes later, I had the strict impression that I was calling a low-paid contract worker at home and I think his brother or boyfriend answered. I was told he had stepped out and would call me back. I expressed my opinion on this brilliant system and was told there was nothing to do but wait until he got back. Forty minutes later, no call, so I called again and was finally told to show up at 5:45 a.m. Great news for us, but can you imagine if we were staying in Jersey that night? Once we got over that hurdle, I was pretty relaxed. Had a great night's sleep, showered with the disinfectant they gave me and we walked the few blocks to the hospital. They couldn't use my port, since I had forgotten to get it flushed, but the IV in my hand didn't hurt much (I have gotten tougher.). There was the inevitable paperwork, trading clothes for gowns, and I walked into the operating room. Last thing I knew, they said "good night, Colleen" and I woke up in recovery. There were people walking by and I remember calling out "hello, hello, I need some help here." I had a lot of pain in one spot under my arm and I think it took about 45 minutes to get it under control. No pump, it was all Dilaudin through the iv. It hurt, and seemed like forever. Then, suddenly, my Mom and Dev were there, I was handed a bucket in case the stretcher ride made me throw up (it didn't) and whee off to the 10th floor. I don't know how to make the hours after anesthesia sound anything but yuck. I am very lucky that I did not throw up, nor was I nauseous when I didn't eat, drink or move. But every tiny sip of water sent me into an agony of nausea that finally broke me down into tears. And I was very dizzy and felt generally miserable for a while. The only good thing I can say about it is it didn't last forever. When I finally managed to get down enough food to switch to oral Percocet, the nausea started to ebb, and I was suddenly up walking to the bathroom. It was like the sun coming out. Thanks to all who wished me a good nights sleep. LOL. First of all, some genius has invented a hospital bed that forces air through the mattress every few minutes to avoid bedsores, to the accompaniment of a buzzing noise. This wonderful feature is not separate from the others, so the only way to disable it is to turn the whole bed off. When I asked the nurse, she made it sound like that would create big problems. In the middle of the night, I decided I didn't care and tried to shut it down. But the plug appeared to be a complicated mechanism with a thermostat that I was afraid to mess with. (Turns out that wasn't the right plug after all, and who knows what I might have done? ) Second, there are compression cuffs they put on your legs and tell you to keep on any time you are in the bed. These are pretty cool and alternate squeezing your ankles and calves every few minutes. Not so great for sleeping, however. Turns out, I could have turned them off, too. So why did I not call the nurse in and ask for a bedtime tutorial? Well, all I can say is that the night nurse seemed very stressed when she introduced herself, telling me she had a critical patient and that she would do her best to fit in the teaching she was supposed to give me. Pretty ludicrous. I don't think I saw her again. Anyway, I felt pretty content when Devra and mom left around 9:00. I had an eyepatch from mom, my earplugs in and plenty of pain meds in my system. I dozed on and off with the bed moving under me, my legs being pumped, listening to my roommate snoring. People came in and out talking loudly and taking vital signs, etc. But I was serene and kept my expectations low. I think I managed to get in a few hours of what might be called sleep. Then, at 2 am, my roommate had her blood pressure taken. She told the aide she needed to use the commode. Her pressure was 198 over something and the nurse told her not to move and left to get the doctor. A number of minutes ticked by. Then I could hear her moaning and then getting up. Picturing a stroke in the works, I called out to her not to get up and that I was coming. The poor thing was in agony trying to hold it in, and there I was, holding my gown together in the back with one hand, in bare feet and pulling my IV pole with me. I pushed the call button and told them she needed help RIGHT NOW. They did arrive then and, since no one even acknowledged me, I went back to my bed and managed to knock a cup of water onto it while trying to get in. Awesome. The aide who came to help did not speak or look at me as I stood there in my gown, holding onto my IV pole. I think she does not find her job inspiring. Can't blame her, really. In short, nighttime at MSK was a parallel universe and I hope heartily that one night there will be my lifetime quota! Morning and getting discharged was the usual chaotic, delayed, hard-to-believe-these-folks-have-ever-done-this-before thing that hospitals everywhere seem to specialize in. But at least everyone was pleasant. I got my physical therapy lesson, instructions on emptying the cool-albeit-gross drains hanging from my left side, and a flu shot and we were free! So here I am, propped up in my bed, Butters on a pillow on the floor next to me, eating my mother's amazing mushroom soup with coconut and a sub. it's hard to believe I was in surgery yesterday morning. But this whole thing is still hard to believe. I look down to the flat spot where my left breast used to be and I just shake my head. It's wild. Well, you surf the waves they send you, that's all I can say. Love, Colleen

In the recovery room...

I am dictating this to my sister Devra from the recovery room. She is here with my mom. They have both been wonderful. We had a hard time getting my pain under control but did get there. I am totally stoned but not hurting. Surgeon said it all went really well. She seems very cheerful but she always seems very cheerful. Mom asked if she always says that things went well and she said absolutely not! Since the room spins every time I move my eyes, thats enough for now. I know a lot of you were waiting for news and I so appreciate your concern. Looks like I am here to fight another day or two. Much more later, love Colleen.

Last thoughts before mastectomy...

Tomorrow I go into the city with Devra and my Mom. Some time during the day, the hospital will call to give me a time to arrive for surgery. I hope we'll go out for a nice dinner and a walk and that I can sleep. With luck, surgery will be early, as there's nothing to eat or drink after midnight. I've never had major surgery before. Funny, but I've been blessed with very good health up until now. Other than mild asthma and lousy joints, I've been hale and hearty. So now we go from zero to sixty in a few seconds, wham, bang into the big time. And I am afraid. Afraid of waking up disoriented, nauseous and in pain. I don't want my breast cut off, nor more damage done under my arm. I don't want to live with the ongoing risk of lymphedema in my left arm. And I sure as hell don't want to be zapped with radiation. But, mainly, I don't want to die. And, if all this results in a life free of cancer, I will regard it as definitely worth it. If the cancer recurs, depending on when and how that goes, I still might. From here, it's impossible to know, so why not be optimistic? Full steam head. Whee!!! Since there is a small risk of not waking up, I thought I'd share a few thoughts that I'd like to make sure I said, but that I won't be embarrassed by when I come through safe and sound. Here are the things I feel best about in my life so far. I think I have been kind. I'm not taking the moral high ground here because I seem to have been born with a genuine dislike of watching other people's pain. Also, was blessed to be born into a very kind family and to have been loved so well that I don't carry around a lot of pain to spread around. That said, if I ever hurt your feelings, whether I meant to or not, I apologize! Whenever I end up shuffling off this mortal coil, I'd like to leave with a sense of not having added to the massive pile of injury done to my fellow human beings. So far, I think I've done pretty well. I have tried to be fair. I was born pretty near the top of the heap of life, safe from war, hunger, abuse and violence of any kind. I got more than my share of goodies of all sorts, and I haven't exactly dedicated my life to trying to give it away! But I have striven not to add to the unfairness. It's why I vote Democrat! And in situations where I've had power, I've tried to be just, and to keep my sights on a larger purpose than helping myself or my buddies to profit. I haven't been perfect, but I have tried. I have reared two good children. With Steve's help, a lot of luck, and a fair amount of effort, we've launched two people who are going to be an asset to the work they choose to do, and to treat other people well. They are fabulous and I am really proud of them both. I have loved well, and I've helped other people to be more loving. I have laughed and made other people laugh. This is major! I have made beautiful music. I have made people think, to get beyond their first reactions and consider things from different perspectives. I like to think this might contribute to general peace and happiness. I have been grateful. Not that I don't piss and moan when things don't go my way, but I haven't taken it all for granted. So, Wednesday afternoon, when I wake up single-breasted but still 100%whole, I'll read this list and probably feel a little silly. But who cares? Because the final thing I feel good about in my life is that I haven't been cool (not that there was much hope of that anyway!). I am most proud of the times when I've been willing to look silly and vulnerable, to admit how much I care, how much I believe in something better, how much I long for. This may be the only form of courage I possess (I am a total wimp in most other ways), but I'm glad I have some. And I intend to have a lot more. So, to end with my favorite quote... "Dance like there's nobody watching. Love like you've never been hurt. Sing like there's nobody listening. And live like its heaven on earth." Mark Twain Later, Colleen

Surgery is scheduled...

Unless my ct-scan of lungs tomorrow is not good enough, I will have a left mastectomy and lymph node dissection next Wednesday the 28th at Sloan Kettering in manhattan. I am relieved to have a date, and will be glad to have it behind me. I am frightened of the general anesthesia and intubation, though I know I'm unlikely to remember waking up and panicking from a tube down my throat, I've seen someone else go through it and I hate the thought. Generally, I don't think about it much. Why worry? I just hope the recovery is easy and that I get used to living without one of my boobs quickly. Since I won't have a reconstruction, I'll have to decide how to deal with that. I assume I'll just wear a prosthesis and avoid low cut shirts, but I never did wear that damned wig, so we'll see... In the meantime, I am healing from chemo. My lungs don't hurt much now unless I exercise or have a cold. I got one this week, despite my attempts at limiting germ exposure. But all the uv exposure to make vitamin d, plus a ton of vitamin C and Niacin, and I recovered in a couple of days. I've been walking and doing Pilates. My strength is returning. My feet and fingers are still numb and tingly and my legs ache when I walk for a while, but I think it's getting better slowly. My eyelashes are about 1/16 of an inch long but are definitely there! My eyebrows are taking their time and I'm a little worried about them. My hair looks really funny...a kind of halo of gray with dark patches here and there.It feels soft like baby hair and Steve rubs it when he walks by. It's definitely uglier than bald was, but, with the weather warmer, I usually just wear it as-is. I don't actually enjoy looking odd, but I'm too lazy to bother with a hat. People smile at me a lot, and look awkward sometimes. Its kind of nice not to give a hoot. I am looking forward to getting off the prednisone and being able to go to public places and see friends. I haven't been in a store, restaurant or office in weeks! It's wierd. Tomorrow, I will get my scan then drive to a dear friends father's funeral. Some things just must be done. Steve is traveling this week, so my wonderful Dad is coming to stay. He will be happy to see how much better I am. I worked on stripping paint from the stairs for hours today, and we took a 2 mile walk at the reservoir. It was glorious out and Butters made us laugh as he dashed about and played with the other dogs. It was hard work for me, walking hard to keep my heart rate up and pushing my poor, sad lungs to wheeze at maximum and my achy legs and feet to keep going, but I felt very much alive nd determined to stay that way! Happy Spring! Colleen

What Butters looks like...

I've been asked to post a photo of the oft-mentioned Butters. This is with a favorite toy...doggy and froggy.

What if you were running out of time...

So I have to confess something. I was hoping cancer would change me more than it has. Maybe the specter of death or even just being sick would help me answer some fundamental questions like "What is the meaning of life?" or, more practically, "What am I doing with my life?" I had this fantasy of waking up each morning with a joy-filled sense of purpose. I thought maybe I wouldn't feel so confused by life, that things would seem simpler, clearer. I also hoped I'd find myself braver. Somehow, having cancer would help me find the "off button" for anxiety and self-doubt. Guess what? Didn't happen. I'm still me, stuck with the same dilemmas, conflicting emotions, habits of mind I had before. Plus, the sheer annoyance of the cancer and treatment process make life seem harder, not easier. Not that I haven't learned a lot, become more patient, a bit tougher, etc. But no magic transformations. Damn! So, if that's the case, I guess I just have to work harder at it. Last night, while looking at a website about breast cancer, I was reminded about just how grim a cancer I have. Pre-menopause onset, triple negative, stage 4 within months. So, while it's not useful or smart to think negatively, it did make me ask myself a useful question. If I DID know I had limited time left (more than enough to just say my goodbyes and visit Disney World) but enough time to accomplish something, what would it be? I don't really have a bucket list because there are just too many things I could do and no meaningful way to choose. In the end, I don't see my life as a collection of experiences, a kind of checklist to get through. Plus, I've already done a lot: lived abroad, learned another language, been on safari, sung to large crowds, reared two great kids. Would I gladly do more? Sure! But, in answering the "If I had one good year left..." I don't jump to a list of travel locations or exotic experiences. What I want is to do is some good work. I'd like to leave more of a mark than I have so far. I'd like the world, the course of history, to be shifted slightly because I was here. As alluded to in paragraph one, I'm still stuck with a lot of the fears and limitations I always had. Rats! But, if time were running out fast (which it is for all of us), what then? So, let's start with admitting here what I really want. What I'd really like to do is help prove that the "hard-ass" view of the world is wrong and that we can get much more done through openness, tolerance, respect and humor than harshness and competition. I believe people are capable of much more than we've allowed of in the past, and that we are on the brink of great change for the better. Hey, I admit there's a lot about human beings not to love. I'm a history major, and you only have to take a cursory glance through the 20th century (not to mention all the other centuries) to find some pretty disheartening stuff. We are capable of doing really bad, and really stupid things. We do it all the time. You could pretty easily give up on the idea that life can be significantly better than it is, given our demonstrated capacity to mess up, lie to ourselves, and treat each other badly. But I think this is an exciting time to be alive. We are just beginning, through science, to gain a real understanding of our own nature and our brains. And we finally have the technology to gather huge amounts of data and test our theories about ourselves. For the first time in human history, we have a potential way to get past our own blindness when we look in the mirror. I've got to be honest. I wouldn't be all that excited about this if all we were learning is more about how rotten we are. Up until fairly recently, a lot of what we thought we knew was pretty freaking depressing. From evolutionary theory, to Adam Smith and B.F. Skinner, the reigning portrait of humankind was that we could be counted on to be selfish, driven primarily by sex and survival, and manipulated best through punishments and rewards. I find this depressing. More than that, it doesn't feel like an accurate picture of the inside of my own head, nor the way people I knew seemed to behave, at least not all the time. It always seemed to me that people are capable of acting from a different place, given the right conditions. Newer research that peers deeply into what motivates us and how we behave offers a complex, nuanced, and I think more hopeful view of how we operate. Altruism, cooperation, curiosity can also drive us. To be fair, we are also learning more about how profoundly irrational and (frankly) nuts we can be. But even this is helpful. Better to know you have blind spots than to crash about convinced you see the light! So, what I'd like to do is contribute to building a world in which more of us get the chance to tap into the less brutal parts of our nature, our curiosity, our creativity, our altruism, courage, humor, compassion, and joy. I believe we can create organizations and systems that bring out the best in us. I, frankly, am tired of living in a world run by people who assume the worst about people. I've always gotten the best results in my own life by assuming the best of people and then acting in a way that makes it easier for them to live up to that expectation. I believe organizations should do the same. If we don't like the behavior we see, we should assume the conditions are making it hard for people to do better, and try something new. And try again. Until we get it right, which includes people feeling truly engaged, useful and appreciated. So, if I am using this cancer experience to find the focus and courage to do what I most care about, what then? Coaching business owners is one way to do this, but it is a slow process one business at a time, and quite dependent on the owner sharing the vision and being willing to do what it takes to implement it. What I'd like to do more is public speaking on this topic. Being in front of an audience, engaging them, answering their questions and taking them through exercises that change their thinking is my favorite way of working. If I had very little time left, that's what I'd do much of the time. So maybe it's time to figure out a way to do just that?

Pre-surgery comeback continues....

Tomorrow I am going to schedule my mastectomy. I'll see if they'll put me on the calendar for the Wednesday after the CT-scan to recheck my lungs. We can get all the pre op work done and only call a halt if they don't think the results are good enough. Since I'm no longer coughing much, and my lungs feel better, I'm confident we'll get the go ahead. I will feel better knowing there is a date in place. For the rest, I feel in limbo. As I wait for my lungs and the rest of me to heal from the chemo, I am in a self-imposed semi-quarantine. I am basically home-bound and restricting visitors. This is hard to do without becoming stir crazy and depressed. I do go out twice a week to a private Pilates session that is helping get me back in shape. And I do coach clients and attend meetings by phone. There is email, texting, Facebook and phone calls, all of which keep me connected. A nd there is Butters, who is never far from my lap (even in the bathroom!) The great news is that I am healing! M hemoglobin count is on the way up, along with other important blood levels. The fog of fatigue is lifting and I am feeling restless and bored. I am walking at least once a day and running (very) short distances to get my heart rate up. This is impressively awful, with me literally gasping for air after a moderate jog of 50 feet or so! But the trend is positive. And my hair is growing back. It is happening in a weird way, coming in faster on the sides and back (male pattern baldness...VERY attractive!) and far more gray than before. I've been coloring my hair for a long time and can't be sure, but it seems there is more white sprouting than my roots would have promised. The other odd thing is the texture, fine like baby hair. I hear it may come in and be gradually replaced by normal hair. Have to say I hope so! I think my eyebrows are coming back, but the evidence for eyelashes is awfully close to wishful thinking at this point. I wish I didn't care. It would be nice to report that vanity had given way to a deeper and more spiritual view of myself. Well, sort of, maybe. I mean, in the end, we still live in the world in which we are attracted or not to each other based on physical attributes. Beautiful people make more money, get the interesting jobs, and on and on. So its hard not to be bummed to find myself emerging from this chemo significantly lower down on the pecking order. I am fatter due to the keep-your-stomach-full-to-avoid nausea plus no energy to move around effect. To also be grayer, possibly lashless, not to mention one-breasted. Well, it's no fun, that's all. Worth it, definitely, but no fun. So what kind of meaning can I create from it? What would I gain along with the freedom to stop caring how I stack up a bit earlier than I had hoped? It used to be that youth was not the only thing worth having, when middle age meant an increase in a different kind of status. Now we want to be sexy until we die, and we pursue that dream through plastic surgery, diet and exercise, makeup and hair dye. Big effort, isn't it? And, in the end, a losing battle. So here's the thought... I embrace strength, fitness and health, do what I can to dress up the exterior without extravagant effort and decide to love the result. Decide to own my middle-agedness with humor and as much grace as I can muster. God, I hate the idea. I resist it, feel ashamed at the loss of status and power it implies. So I have internalized the cultural devaluation of older women, at least those who are neither thin no youthful-looking. Ugh! On the other hand, I'm not naive enough to think I create my own rules, that being comfortable in my own skin means I won't pay a price with others. Fatter and older is not better in our world. Worth thinking about further. Another exception to my isolation are rehearsals for a cabaret performance May 2. To give that up seems too high a price. So I went last week. The lack of breath is a challenge, and I have lost some range and transitions between chest and head are rough. But the voice is still sound and will come back. To be there again singing is balm to my soul and a promise of a future beyond sickness. On a final note, Steve and I just took the dog to the reservoir and walked a good 2 miles! I am tired, but did manage a short sprint at the end before my knee complained too much. Running is not a good form of exercise for me but I am coming back! Surgery and radiation still too come, but I am hopeful the worst of this is behind me.