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.

Hazy lungs and other weirdnesses...

Yesterday I trekked into the city to see the Sloan Kettering pulmonologist. They fit me in with an urgent appointment, which is a good thing and not-so-good, of course. The issue is this lung thing I have going on. My oncologist had prescribed prednisone and two antibiotics, which I'd been on for seven days. Three days ago, still on both, I suddenly got incredibly nauseous and started throwing up like crazy. I don't think I ever managed to vomit that much and, coupled with the diarrhea that had started with the antibiotics, all the progress I was making seemed to grind to a halt. I felt like hell and stopped the antibiotics while waiting to come in. The pulmonary area of Sloan Kettering is a scary place. People there are coping with very bad stuff. One imagines its either lung cancer or some other cancer coupled with something great like emphysema or copd. I was the youngest patient there by about 20 years from the looks of it. A fair number of breathing machines. Not a lot of smiles. I have to say it was pretty efficient. Lots of forms to fill out that were very brief if you don't smoke. Basically, if you don't smoke, you can skip most of the questions. So, if you don't believe smoking is really, really, really addictive, try to imagine sitting there in that terrifying place, with all that money being thrown at your condition and all sorts of nasty tests and treatments facing you, not to mention your very likely death, and still having to write on the forms that you smoke. What goes on in your mind? Denial? Despair? Self-loathing? Anger? It's hard enough to go through this without the pretty certain knowledge that you brought it on yourself. As a friendly hint, never let anyone talk you into a nasal swab just for the fun of it. To rule out infections of various sorts, they stick very long q-tip thingies WAAAY up each nostril for what seems like much longer than a few seconds. I love the way they say it will be "uncomfortable." I don't know about you but, to me, uncomfortable is like an itchy shirt, or a sofa with broken springs. Not that I recommend them saying "now this is going to hurt like hell..." but it's funny how we just accept code words for things. A little conspiracy of denial. The nurse was quite sympathetic and apologized, which does help, somehow. If you know you have to get one of these in advance, take Tylenol before you go! The doctor described what they are seeing in my lungs as a " diffuse haziness." If it were pneumonia, they'd expect to see it in one place, but they can't rule out some rare types. One of the first chemo drugs I was on, adriomycin, can also cause congestive heart failure, which this could also be (oh, great!) but seems that I don't have many of the other symptoms. So the working hypothesis remains that the Taxol has caused inflammation in my lungs. Treatment is continued prednisone. I didn't realize that this depresses immune function, which is why they also want me on a very expensive (as in $1,000 a month) antibiotic called Atovaquone, used for HIV and organ donor patients to avoid a lovely fungal pneumonia. Side effects of the drug, other than bankruptcy, are nausea/ vomiting, diarrhea, etc. Sounds like a great way to get strong and fight cancer, huh? The pulmonary function test was pretty interesting, though. They have you sit in a glass phone booth-like enclosure, put your lips around a plastic thingie and bite down on it. Then they clip your nose shut and tell you what's going to happen. There were three tests. The first was to take a deep breath and blow out as hard, fast and long as you can. The technician is your cheerleader, urging you on "Great, great, keep going, more, more." phew! Exhausting and made me light-headed. It's a little hard not to feel a bit panicky with this thing in your mouth and your nose shut. I am grateful, as always, for my practice at relaxation techniques. The second test is to take short little breaths, which they then block off, so you are sucking away with no air coming in. Suffice it to say that the body doesn't care for this and you are very glad its only a few seconds. I can't imagine what it would be like to have truly damaged lungs, or an anxiety disorder and go through this, even though it isn't painful. I did very well on the first two tests, which check your airways. I scored even higher than expected in one. The third involves breathing in from one bag, holding your breath and breathing out into another. It checks how well the membranes that transports gasses to and from the lungs to the bloodstream are working. Apparently, disease or some meds can thicken the membranes. Yuck! They look at oxygen, carbon monoxide and helium. 80% or above is normal range, I was 78. So it seems my lung are getting enough air but not getting it into my blood well enough. The technician seemed to think the chemo also the most likely cause. So we are now looking at a delay of at least another month before surgery. Aside from putting off getting my life back, it makes me worry about the cancer. The purpose of the surgery is to remove tissue that may still be cancerous (in one of the sweet ironies of life, we won't know this until it is removed and checked.) If it is, then getting it the hell out seems like a good thing to do, and not something to delay. If not, then having more time to recover before surgery is a good thing. Of course, having general anesthesia while your lungs are broken is just plain dumb, which is what they are worried about. What a mess! The good news is that I am feeling better today. My lungs still feel tight and heavy and I cough when I talk too much, but I am more energetic. I plan to take as much vitamin c and niacin as I can tolerate and get under the uv light for vitamin d and drink lots of fluid to recover from and prepare for the antibiotic effects. In many ways, the hardest part of my current treatment plan is the isolation. Interestingly, the doctors do not recommend staying away from people and crowded places. They agree its good idea, but they don't tell you to do it. In fact, they think nothing of sending you into hospitals and their offices, which are crawling with sick people. It's as if they don't even consider it possible to avoid exposure. It's not in their model, and not in theiinterstate to think they could be part of the problem. So this I've had to impose on myself, which doesn't make it easier. At a time when I am most lonely and in need of people, I am cut off. Thank God for the Internet, email, phone and texting. But I miss being out in the world, shopping, literally seeing people, getting hugs (anyone who does visit has a strictly hands-off policy.) Butters is some help...he is the world's cuddliest dog and I can feel the oxytocin flood my system when I pet him. Of course, he also has dog breath, licks my face and tries to steal whatever I am eating. But you can't have everything! And there is Steve, of course, my valiant and hard-working guy, tortured by his worry that the course of treatment I am pursuing may be harming more than its helping, being supportive while still offering alternatives. It doesn't make it easier in the short run, but may well save me. Hard to know what to do in the face of something this awful and that has not, frankly, been one of the great successes of modern medicine. So we muddle along, doing the best we can with the information we can get, hoping for the best, enjoying what we can. Sounds a lot like life!

New wrinkle in the plan....

My surgery has been postponed. I need to recover first from lung inflammation that 5% (lucky me!) get from Taxol, my last chemo drug. I had started to feel better from chemo but my lungs weren't feeling great. I had gotten another cold virus and figured it was that but it was getting worse and worse. I had a cough and my lungs hurt and felt tight. They took a cat scan and saw the same inflammation that had shown up on my pet-scan. Not cancer, but they are unwilling to operate until it clears up. So, we are treating this with two antibiotics to forestall pneumonia, prednisone and lots of vitamin c, niacin, and vitamin D through light exposure (the latter 3 coming from us, not the medical folks.). I now sem to be getting better fast. But I couldn't understand why I was suddenly weepy, until I found out mood swings are a common side effect of prednisone. I am also jittery, having trouble sleeping and blowing up like a balloon from water retention. Amazing stuff, prednisone, but BAAAD for you! The toughest news to take, however, is that, as I inferred from their not angling my treatment course, the clean pet-scan is seen as encouraging but not definitive. The doctor, to whom I hadn't spoken since the scan, said that it's the pathology Fro. Surgery that "really counts.". They'll biopsy all the breast tissue and the lymph nodes they remove and see whether they still find live cancer cells. If so, I guess we feel grateful they've been removed surgically, hope the radiation kills anything still around the chest wall, and that any cancer that got into my system through the lymph nodes succumbed to the chemo or my immune system. And we wait and see. We wait and see in any case. That's the real deal with cancer. You get your regular scans, you get on with your life, take care of yourself and hope for the best. As we all do, once something happens to jolt us out of our immortality dream-state. If we're smart, we appreciate the time we have and don't ruin it with fear about the end. Easier said than done, of course. So here's how I'm doing it. I write every morning 5 things for which I'm grateful. I work actively on forgiveness, of myself and others, letting go of past wrongs so I can chose to live as I want to and not in reaction to them. I work on appreciating the present moment, stopping long enough to actually look at, taste, smell, hear and feel what's going on right now. I am TERRIBLE at this. I mean, really lousy. The impatient, analytical and judgmental parts of my brain just won't shut up. What a racket they make. But I am learning. I know that clinical voice in my head is not all of me, just one sometimes useful piece of the whole. I'm learning to hear it without immediately identifying with it, thinking "that's me thinking, that's why I think, believe, know about life." When I remember to, I acknowledge the input ("thanks for the opinion, worry, or memory") and return my attention to my senses. I feel my breath going in and out (nothing like a bout of lung inflammation to make you appreciate a good, clear breath!) I look at the sunlight on the floor, listen to the traffic, feel Butters curled up against me. And it's then, not when I'm worried about losing it all, but when I'm actually allowing myself to have it, that it's all worthwhile. Have a great day, and try to be there for some of it! Colleen

Great news...and facing the hard stuff

So there is thinking you will be having a mastectomy, and there is knowing. Today I know. But first, there is very, very good news to share. The results of the PET Scan came yesterday. There is no longer any cancerous activity evident anywhere. A clean sweep. A hugely successful chemo treatment. A fantastic and wonderful result! I heard the news and cried my eyes out. Hooray! Hooray! Hooray! It would be great if this meant a change in treatment course. It does not. Even with this result, they are recommending a single mastectomy, full lymph node dissection and chest wall and neck radiation. This is based on the treatment protocols that they believe are most likely to keep me alive. It could be overkill, but we can't know that right now. In short, the clean scan is great news but not regarded as a guarantee of any kind. There are no guarantees here. Even with the full-bore treatment, the odds of recurrence are high. But we can hope that this won't happen to me because the chemo was as successful as the scan seems to indicate. One thing I think is pretty clear is that the vitamins did not interfere. I believe, based on data from programs that combine chemo and vitamins, that they helped. I think there's a lot of reason to believe them responsible for helping to produce the great chemo results. I am very glad I persisted against advice in this. So, once I get my asthma under control, I can have the surgery. There will be no reconstruction. The type of mastectomy and the need to irradiate make it impossible now and difficult in the future. Could possibly be done after a year if the stars align. I probably won't bother. So, I will be have to embrace being a left-handed Amazon. Too bad I am so right-handed that my arrow shooting will suck. I also hear of women who get their chest tattooed to create art out of loss. Can't really see myself going for the pain of serious tattooing, but you never know.... A lot has been written about the challenge of facing a mastectomy. I'm not sure what I can add. Basically, it sucks. I hate the idea of never wearing anything low-cut, of having to wear a foam boob or be lopsided. I know I'll hate looking down at a scar where my breast used to be. Poor me. Honestly. You should feel sorry for me and send me presents to make it up to me. Really, you should. But, Hell, I'll be there to do the looking. And when I look up from my battered chest, I will see my beautiful kids, my loving husband, my clients, my precious, gorgeous glorious LIFE all around me. The Amazons had it right. A breast is a small sacrifice to make to get what you really want. And with the success of my chemo, it's looking great for getting that. Goooooo life!

PET scan plans

Today is saturday. I woke up for first time in as long as I can remember feeling pretty well. It. Lasted until mid-morning, when it became clear I'd picked up a touch of the stomach virus going around. I felt shaky and lousy from that, yet, underneath, I can still feel my strength returning. The tide has turned. I am starting to think again about my business and the directions I want to take it in. I am pondering projects in the house and how to best tackle them. When I get up and wlk around, I am still tired, but my body no longer sends me distress "lie down, lie own" signals the entire time. Best of all, the pain in my hips, back and knees is almost gone. My feet are still numb and tingly, as are my hands. My left arm has shooting nerve pain if I stretch it. I can't do much of anything without feeling wiped out. But the healing has begun. On Tuesday, I'll have a PET scan. I'll get up at 5 to eat and drink then fast for six hours. In the early afternoon, they'll inject radioactive dye into my port and have me drink a large amount of yucky red stuff. I am good at this drinking of stuff without getting too sick. Many people find it a real trlal but it's a small way in which I'm a little tough. I'm grateful for that. After waiting an hour or so to develop a full radioactive glow, they'll put me in the scanner. I will lie perfectly still for 105 minutes while they look for cancer in every part of me. We will find out just what this chemo has done for me. Has the cancer, as it seems to have, retreated from the lymph nodes above my collarbone? Under my arm? Have the two small nodes in my breast gotten smaller? The cancer in the skin of the breast, oh most dreaded inflammatory carcinoma: Have you retreated, stayed, grown? Has cancer appeared anywhere else? If that were to happen during chemo itself, can you imagine worse news? The funny thing is, I can look at all these possibilities but I'm not really worried. All my life, I've worried about things I knew I shouldn't. Just couldn't seem to help it. Now, with all this looming, I shrug and laugh and think about other things. Because at this moment, I've got better things to do than worry. Butters is sacked out at my feet digesting half a carrot cake he ate when we weren't looking. Steve and I will go for a short walk soon. Bill and Kathy came to lunch to celebrate Stan's 77th birthday and Leanna brought fabulous Indian food. We pigged out and laughed and talked. I just finished a Sara Paretsky book. Nothing earth shattering. Just a nice, lucky day in a nice, lucky life. I am bored, which is another sign of returning health. All good. On Thursday, I'll meet the surgeon. She'll tell me what she wants to do. I am assuming mastectomy. I may have some choices regarding reconstruction. With luck, we can get a date scheduled by the end of the week for the surgery in a few more weeks. Will keep you posted. The adventure continues...

I would like my eyelashes back now, please....

So here I sit at rock bottom of the chemo journey, which is also, of course, the turning point.  After 4 months of dose-dense AC-T chemo, my body has literally taken all they thought I could. This was the planned target, the spot at which the potential damage to cancer would be maximized without actually taking me out with it.  That's the whole chemo concept, at least when treating aggressively for a cure with a cancer as aggressive and advanced as mine.

So here I lie on the couch, Butters sleeping on my stomach, contemplating the damage done (to the cancer, we hope) and to this poor 46-year old body of mine.  There is much  work to be done in the healing department. I am feeling better about the persistent ache and weakness in my back and legs since my case manager told me it's most likely my bone marrow, even without the neulasta injection, working to replace white blood cells.  Since my cell counts never got too low, my hope is it will be short-lived.

Just think of all the work my body has to do now.  A whole head of hair to grow back, an entire body of hair, actually.  Not to mention all those eyelashes.  Heart cells, lung cells, hemoglobin (oh, to climb stairs without sucking wind at the top!). And on and on.  And then there will be surgery and radiation to get through.

When I think of all that, I realize I am going to have to be something I'm not know for...patient!  So, over the past two days, I've been consciously focussing on simply being, resting, and breathing.  When I find myself feeling that I should be DOing something active, I try to let that go and find a space in my head that feels no need to justify itself.  Who knows if it's helping me heal, but it feels much better than being frustrated, or dragging myself around feeling terrible.  In fact, as I lie here simply being, I feel these rushes (probably endorphins) of well-being, contentment and strength. It feels like healing, and like hope.

A quick note of thanks to all of you who commented on Facebook when I decided to wail in frustration the other night. If you are hurting, as I was, it is a great comfort to not be alone.  All the good wishes and encouragement were a balm to my wounded soul. Stumnbling in a dark place, I called out and found myself surrounded by candles, flickering with compassion and caring.  Got me out of the dark much quicker.  How good to know we don't  always have to provide our own light.  Thanks for being there.

Life and death and other small issues...

Chemo's effects are cumulative, they say and that's right. Now it's almost over, I'm lots weaker than I was four months ago. But this morning, I feel pretty damned good. Towards the beginning of chemo, day 3 (Saturday) was often pretty good. In fact, we finished our kitchen on those days. I painted, scraped, sanded and cleaned. Then, just before Christmas, I got my first cold virus and the Neulasta injections started to cause more bone pain. Since the, life's been pretty rough. Although I've kept up with coaching my clients by phone, I've been pretty much bedridden. Walking to the kitchen and back was a workout, followed by a grateful collapse onto the couch.

So, what a joy to wake up at 5:30 and feel I can get something done today. In fact, I've been feeling stronger for days. On Tuesday evening, I drove to a client's to help conduct a group interview for hiring (very successful), a big stretch for me. Thursday and Friday were full working days, with another meeting at a client's, coaching and energy in-between to get caught up on much work.

Thursday might have ended better if I hadn't let my excitement at feeling like me again go to my head, however. Instead of going home to rest afterwards, I stopped at rite aid. On the way in, obviously discounting the numbness in my feet, the fact that I was wearing heels, and my overall fatigue, I was moving pretty fast. My heel caught in the hem of my slacks and, after flailing for a long adrenaline-hyped moment, knew I was GOING DOWN. With that shocking violence of an full-grown adult crashing to earth, my hip smashed into the edge of the sidewalk, my purse contents exploded around me, and there I lay, in all my glory. For a second, I thought no one would help, but the only person there, a young woman, rushed up full of concern, helping my collect my belongings as I mustered what dignity remained and limped into the store.

Now, you might think, in theory, that having a BIG problem like cancer, would make it easy to laugh off the small stuff. And, in fact, it does. Right now, I am laughing about it, learning from it, moving on easily. But, in the moment, it makes it worse. My overall fragility got very clear to me. As I sat waiting for my prescription, I fought back tears of frustration and vulnerability. And the unconscious (and utterly one-sided) bargain I'd made in my mind became apparent. The internal voice goes like this..."Wait a freaking second here, don't I already have enough? Aren't I handling all this well enough, do I need more crap? Do you really expect me to take this on, too?".

It's pretty funny when you think about it. As if life were fair. As if my getting cancer is some kind of conscious act by a knowing God or power that cares at all what I think about it. Ha ha. Tell it to the folks in Darfur.

That's not to say I don't think my attitude is important. Despite the American Cancer Society posting an opinion on their website that the research doesn't correlate attitude and treatment outcomes (please don't donate to them on my behalf....ever!) I continue to find it crucial and think the evidence will get stronger as we study it more and understand it better.

I do know that taking ownership of one thing you can, which is how you choose to think about and give meaning to the experience transforms it. It gives you the strength to do the hard things that must be done, and makes the treatment period feel empowering and even joyous at times. But does it make you well? The research is mixed. Between the crazy extremists who tell you to think away your cancer instead of chemo (better the results of that on their heads than mine!), to arrogant bastards who, 50 years after the placebo effect was discovered, insist the mind cannot affect healing, there is a truth the rest of struggle to find and make use of. Visualization, gratitude, meditation, laughter. I think by all help reduce stress and conserve strength for healing, if nothing else. Besides, if this does kill me, I'll have been happier during the time I do have. Hell, why not?

But there is one thing I wonder about. The attitude police would have me avoid all thoughts of an untimely death. In this way of thinking, I should create and maintain in my head only positive thoughts of a cancer-free life and hold to that. And, most of the time, that's what I do. It's easier, less scary and stressful, keeps me feeling sane and strong.

And yet...there is an end to all of this for all of us. None of us gets out alive. And there is a deep sweetness to recognizing just how fragile and precious it is to be here now. There are moments when being in touch with that impermanence feels like a form of healing. A healing deeper, perhaps, than what's going on in my cells at that moment. Last night, I stroked Steve's arm in the dark and felt, truly felt, every smooth, furry, muscled and slack centimeter of it. I found myself weeping, not with pain, but with joy at the perfection of the moment. To be loved, to feel love, to be alive to the input of my fingertips to my brain. To be there.

I have always wanted to be one of those people who bring joy to life. You know the ones I mean, the ones whose natural resting face is a smile. The ones who laugh easily, find the bright side quickly, remind the rest I us, just by their presence, that we're probably worrying and complaining more than we need to. I do think I got some of this at birth. Mom describes me in her journal back then as a "bubble" and have a natural bent toward happiness and a great sense of humor.

But I'm also a worrier. Blessed or cursed with sensitivity to the feelings of others, it's easy for me to slip into letting what others think or feel define me. All that input...the fears, resentments, assumptions of the people around me so apparent, so clear. As if my own baggage weren't more than enough!

Slowly, though, this crazy cancer adventure is helping. More and more, despite, or because of the struggle and fear, I am finding my way to the joy. The kindness of others that it brings out, from the smiles of strangers at my bald head, the cards that arrive weekly, the likes and comments on Facebook and my blog, the emails, the visits, the calls, add sweetness to every day. I am more alone than I have ever been, as we all are in facing this, and yet more connected than ever. It's a great comfort. Knowing I am important to people, that I would be missed...how great is that? Like getting to hear your own eulogy, and then still being around for the lunch afterwards!

So here I am, still enjoying the banquet...savoring it more than ever and being mindful to do so. Without facing the tremendous power of death, that inextricable yang to the yin of being alive, I doubt we can fully experience the journey we are on. So, don't think me morbid or that I'm giving up on fighting this cancer. I've always believed that it's only in coming to terms with death that we can truly live.

I figure it this way. Whether I am here another 50 years, or get hit by a bus tomorrow, what of that time should I waste in not being fully alive? How much if that time should I devote to wishing to change the past, worrying about things that may never happen, or being unhappy about things I simply can't change. I'm going for zero. Why not join me?

Love, Colleen

Where courage comes from....

Right now, at this moment, I feel wonderful. I am lying on the couch with Butters on my life. Aside from a small twinge in my side and an ache in my legs, I am not in pain. More importantly, the terrible feeling of illness that's been with me for the past few days has lifted. I felt well enough to walk around the block just now. So long as I don't try to actually do anything, I feel okay.

I'm absurdly grateful. I was starting to think I wouldn't feel anything but completely weak and shaky from now until the end of chemo. So to think I might have the energy to cook a meal, walk the dog or attend a meeting seems very exciting. You take what you can get.

And here's the really great news. Four days from now, I get my final dose of chemo. Even if the two weeks following are as bad or worse than the last few cycles have been (which assumes I get yet another cold virus), the end is in sight. As the end of the cycle draws nearer and my cells start to heal, they will actually get a chance to do so. No toxic cocktail will flow into my veins as soon as I'm strong enough to tolerate it. Now that's a thought to celebrate.

I am glad, in retrospect, to have had chemo first. Surgery and radiation seem far less daunting now I've climbed this mountain. In fact, I'm not worried at all about mastectomy any more. I'm more worried about nausea from the anesthetic and pain from the operation than losing a breast. I honestly couldn't care less. Maybe I've already done my grieving, but I don't think that's it. They can take what they need to and good riddance.

Just give me my energy, some time free of pain, the chance to see my kids grow up. I wouldn't even care if my hair never grew back. I'd like the numbness and tingling in my fingers to go away. It does for most people, but if it doesn't, I can live with that, too. Just can't wait to get back to living!

Finally, thanks to all of you who took the time to say my writing matters. I have found myself at the center of a storm of love and compassion. People I knew in high school, college chums, colleagues, family, all taking time to throw some caring my way. It's breathtaking.

I have always believed that it is our compassion and altruism, our curiosity and our love of expressing ourselves that defines our greatness. We live in a world driven by the competitive and pleasure-seeking parts of our brain and the Mitt Romneys of the world have benefitted greatly. But we remain unsatisfied by the results. We want a better world than one driven by greed.

I find it takes courage to believe in people. In my work, I help my clients build companies that tap into our need to care, rather than treating people like cogs in a machine. Its not that incentives don't work, it's that they work in a very limited way and always have unintended consequences. We love to game systems that treat us like slot machines. In fact, we can't help it. But we can do better, and we truly want to.

Those of you rooting for me to get better aren't doing it for yourselves. Most of your lives barely touch mine and, though you might miss me, it's the idea of me that matters. We just want to keep everyone in the lifeboat. So, thank you for caring, not just because it touches me and gives me courage to know I would be missed, but because it gives me courage to be reminded that we crazy humans do care about each other. That gives me an even higher order of hope. The reminder that, when this is over, I have work to do, will keep me going when all else fails. Thank you for that.

Am I still me?

What a relief! After I had managed to drag myself off the couch, put on some makeup and work clothes and prepare for a now very rare meeting offsite, my client called to say the candidates had cancelled. Now, this is bad news for my dear client and I am heartily sorry. But I can't lie. I am happy to be spared the ordeal. Back to bed, Thank God!

It is hard to describe the fatigue that is chemo. When absolute anything is an effort, you find stuff out about yourself, and not all of it good. It can be pretty pathetic. I mean, wouldn't you think that being reduced to 10% of your normal output would make you want to do only the most important stuff? Instead, I end up watching stupid tv reruns or cleaning the sink. I mean, who cares if the damned sink is clean? I have freaking cancer! Yet the crazy need to feel you've done something has great sticking power, even near rock bottom!

When you are this tired, you do what is easy. Its kind of disappointing! I know, I know, it's temporary. I get that. This is just a tactical retreat into the land of being poisoned in order to kill the cancer cells before they kill me. I know I'm doing a pretty good job with a shitty situation, all things considered.

And yet. It's morbidly fascinating to see first hand how easy it is to simply let your life go. It just goes away. You wake up, you are tired and feel like crap, and, before you know it, another day in your possibly short life is gone. Just like that. I guess a fair number of us live that way without being sick. But it makes you think. I mean, what is your life? Is it what you do? Some bucket list of actions you've taken, impact you've had? If so, I'm in trouble. Not much output these days!

So what does it mean to be really alive? My Aunt Kathy has Alzheimer's and spends her days in a twilight world of simple awareness. She likes to have her back rubbed, she laughs occasionally, but mainly her brain has deteriorated to the point that it's hard to say whether she, Kathy Keenan, is anywhere at all. Yet, almost every Saturday, my Dad and his other sisters and their spouses gather to visit her and then go out to dinner. They feed her, try to get her to respond, and enjoy each other's company. What still exists of Kathy is their love for her. The space she created in their lives when she was actually an actor on the stage (and was she!) is what remains. Her impact on the world is now created almost entirely by others who choose to make her important, though she'll never again know it.

Although I am still very much alive and plan to remain so, I wonder what has become, temporarily, of who I was? That dynamic, creative actor, the one with fingers in many pies at once is simply gone. She has left the stage, bowed out. All the things she might have done during this time will not happen. They are lost forever. Not such a big deal, but if you think about life as a series of "accomplishments", then I have ground pretty much to a halt for now! I'm not judging myself for this, I'm just fascinated by how different it feels to be me without the energy to do anything but lie around. Some days I wonder if I still exist!

For now, at least, I write. I write, therefore, I am. And, every few days, a small group of people from all over the world stops what they are doing and reads about my life with cancer. I send some electrons out into the world filled with stories and musings, dumping the insides of my brain into the ether. Small ripples into the world from my couch. Will anything change as a result? Will someone act differently some day somewhere because of what I've written? Unlikely, I think. But it's fun to think so. Love to you all.

Colleen

Good port news

Nothing like a little good news from time to time. The port installed in my chest (gross) managed to migrate across my chest to a new vein (super gross) AND seems to have managed to find a perfectly good home in its new vein delivering chemo and other various substances to my bloodstream at least as well as an IV in my arm would. So, after a long drive to Westfield and nothing to eat all morning, having to lie on a table with a gown on and get poked yet again, I have the all clear to use my port again. Hooray!

This second-to-last chemo round is going better then the last. Once I decided to adopt the "lost weekend" approach by taking enough Percocet to manage the bone pain, it was less overwhelming. A week from treatment this morning, I am definitely stronger. For one, I can walk again, and am off Percocet.

I feel reasonably alert and am working again. Not the dynamo I used to be, but able to think clearly and work with my clients. Butters and I will be on our own for two days while Steve is at a meeting, so the timing is good. Thanks for will of you following along with me!

Bone pain and next steps...

This weekend is about staying on top of the pain. With the help of Percocet, this isn't too hard. Like a clock, the pain in my bone marrow kicked in 24 hours after my neulasta injection. Along with the pain seems to come a kind of weakness in my hips and legs that makes walking feel very uncertain. I think this is a preview of what being old feels like!

Being on Percocet isn't half bad. I feel dopey and silly, which is fun. The pain still comes throgh and a heating pad seems to help. I actually managed to clean the kitchen, vacuum the downstairs, catch up on filing and wash the kitchen floor yesterday. Hardly the stuff of champions, but it's something at least.

Joseph and Margaret are both back at school and Steve, Butters and I are living the empty nest life again. I do enjoy the serenity and order. It is nice to be able to concentrate on getting well and helping Steve wage his ongoing battle against colds. Steve's lousy immune system has been a trial as long as I've known him. To be an apparently healthy person who works hard to stay fit, eats well, takes vitamins, while constantly having to remain vigilant about getting colds that turn into sinus pain all the time really stinks. The best news is that vitamin D, in the form of uv light therapy, seems to be doing with other treatments have not. We are optimistic. As it is, I have told him he's not invited to the hospital when I get my surgery, since I need him well to help me recover. It will be sad not to have him there, but I will be well supported with family. He will take excellent care of me when I get home.

At my next chemo visit on feb 1, I imagine the next phase really begins. There is talk of restaging the cancer, which sounds like more tests and scans. I am fascinated by this idea of restaging. Even in the best case scenario, where they find no more evidence of cancer outside the initial area, what does that really mean? Will it change their treatment plan? If not, why not skip the testing?

There is this lovely word "recurrence", of which I have a high likelihood with this cancer, and that goes to the heart of things. Two possibilities: First, that cancer cells are already active somewhere no scans can find them yet. If that is the case, then being declared "cancer-free" is essentially meaningless. The second possibility is that, while no cancer cells are extant, the underlying conditions in my body that allowed the cancer to begin still remain. This is reflected in the description of cancer as "a systemic disease, not a tumor disease."

What they recommend for treatment will tell me a lot about how they conceptualize it. At this point, the plan (I think) is to remove the entire breast then irradiate the surrounding tissue and lymph nodes that were cancerous. I am not sure whether they will remove the nodes, there seems no talk of that. I have to find out why. Not that I'm in a hurry to have them gone. My first surgeon removed nodes under the arm because she said it was not possible to biopsy them otherwise. A subsequent cat-scan biopsy at Sloan proved this to be wrong, about which I have every cause to be angry, unless they all end up being removed.

Meanwhile, we wait in the dark. I don't find the MSK folks to be working a real team. They seem to pass people in a sequential fashion from, say, oncologist to surgeon to radiologist. One gets the sense or territory being respected...not in the interest of the patient. It is going to take effort on our part to keep it all fully integrated. It is frightening to think of the many who need to do this without the education, resources and, frankly, the confidence to tackle the system. We can and should do better.

Feeling good!

I feel good today for the first time in 3 weeks. Let me define good. Good feels lousy. I am tired and my stomach is upset and I feel slightly jittery from the steroids I am on. But good feels like sitting up all day rather than lying down, having two coaching sessions and in- between being at the computer managing to clear up a number of items. Good is working a pretty full day before going in for my neulasta shot, and not needing a nap. Good is feeling as if I have my life back, instead of this half-life of lying on the couch in between coaching calls and watching movies on my iPod, not even making dinner. Blech.

Over the next few days, I'll taper off the steroids and also see how bad the bone pain from the Neulasta will be. I will continue to avoid crowds in an attempt to stay healthy. I think I picked up two separate cold virus over the holidays and that's been the problem. Anyway, am hoping this lasts! Glad to be up and around again.

I am writing this with Butters on my lap. Life is sweet!

Migrating ports and other weirdness...

I saw my chest x-ray today. The port catheter I have has "migrated." This was no slight shift in position but a major pilgrimage. The claim is that the catheter originally snaked straight down into the jugular vein. Then it moved on its own back upwards, took a left and ended up across my breast bone in a smaller vein, 3-4 inches away. Apparently, this is something that does happen, crazy as it sounds. But I wonder if that isn't where it was from the beginning. They did not xray it then. How do they know it went correctly the first timeg? if it did move, my guess is it moved over a month ago, when we first had the trouble with blood return.

Before this started, I didn't know what a blood return was. When you get an IV, they push saline into it and then draw it back to see if they get blood. Blood is good. Means you are well into a vein. No blood is bad, means you need to start over. Those of us with small, crappy, slippery veins learn all about blood return or the sad lack thereof.

Today, no blood would have meant the cath was not in a good vein and we couldn't use it for my chemo. Even though this would have meant struggling with IV nastiness, I was relaxed. I felt sure somehow we could manage to get a good return and avoid gigging into my veins. I had the same nurse who was with me when we had trouble before and she was more nervous than I was. I sat up straight, held my chest out, she drew back the syringe and beautiful red blood flowed into it. We cheered. I would never have thought I'd be so happy to see my own blood.

So, with no allergic reaction, and 9 hours at the cancer center later, I'm through another treatment. I have to decide what to do about this port, and I need not to get another cold. Then we move on to surgery and the radiation. There will be decisions to be made, which is the hardest thing of all.

Right now, I am eating my mom's pecan pie with ice cream. Knowing its not good for me, I figure I'd better really enjoy it!

The letting go of things...

It's surprising what you can live without. As I plough on, things have fallen by the wayside. At first, it was hard not to have hair. Now I have lost my eyelashes, my lids are often swollen and I have dark circles and grayish skin. Yet I go out and don't bother with makeup. Gone are the headscarves, in favor of easy hats, which I take off when hot. I simply don't care much how I look these days. I feel almost invisible, or as if I am traveling in a parallel universe, in which the people I interact with are playing a game I have opted out of temporarily. The caring is something I used to have that I've let fall out of my pocket somewhere. Maybe I'll pick it up again some time. Maybe not.

My new face in the mirror is now familiar and the woman who used to look back at me seems very far away. I wonder if she will reappear, or perhaps a third person, with curly hair (that happens sometimes), with the gray I used to color (but won't be able to when when it's very short)' older and more careworn than she who entered this gauntlet? Or maybe the filter behind the eyes is so changed that I will never again see myself the same way, even if I look the same to everyone else. My immortality has dropped away. The unenchanted princess who looks back at me, with amused and knowing eyes, is the companion of my remaining years. She is okay. I like her just fine.

I had a chest X-ray today to make sure I have bronchitis and not pneumonia, and they saw that my mediport has migrated. The end that snakes through my vein has moved. Apparently this happens, particularly with younger patients. Who knows why? So, they tell me we will try to use it anyway for my last two treatments. Tomorrow we shall have the fun of seeing whether it works. I think this actually happened a while back. During my final A-C chemo treatment, we had a blood return problem. The only way we could get a return was for me to take a deep breath, let it out and repeat with my head turned to the side. If that works tomorrow, we're okay. If not, it's back to the poor, scarred veins in my arms and hands for the chemo IV. Wish me luck.

So here is another thing I've let go of. Not, long ago, this would have upset me quite a bit. I would have worried that there was something I should've done to avoid this problem. And I would be very worried right now about maybe ending up with an IV tomorrow (after 3-4 tries, perhaps). I think what I've let go of is the idea that there is some way it is "supposed" to go tomorrow and I can somehow do something about it. Now I tell myself it will be fine, will go smoothly, and then let it be what is. I'm just too damned tired to worry about it.

Last night, Steve and I got to reminiscing. I was remembering my childhood and I suddenly said "My God, I have a wonderful life!" I am really having a fabulous life. Most of the problems I've had have been in my own mind. So today, bronchitis and all, I am grateful. I am thinking of all my friends at ActionCOACH conference without me and I miss them and laugh thinking of the fun I've had with them. I think of my family, my childhood and college friends. I know wonderful people, have heard and performed great music, acted in great plays, made art, enjoyed art, made love, been loved, seen so many cities and gorgeous places, read so many books, eaten such good food.

And I have mattered to people. I have done a little bit of good in a lot of places, made people laugh, opened their eyes to new ideas, made them a bit more thoughtful, a bit more compassionate, a bit more sensible, I hope. And I'll continue to do so. I look forward to getting my strength back. My work is to help organizations bring out the best in people. There is much to be done. Looking forward to being back, stronger than ever!

2 flights of stairs...

Camp Chemo is on the third floor. I decided at the beginning to walk up both flights before my sessions if I could. So far, up to session 6 of 8, I have. So far, I can do it without resting, although there is a walk across the second floor to the second fairway that breaks the climb. What is significant, is how much harder it gets. In the beginning, I could march up with vigor, arrive at the top very slightly breathless, and recover in seconds. This last time, I climbed slowly but purposefully and arrived at the top truly sucking wind. It takes almost 10 minutes for my heart rate to return to normal and my muscles to stop aching from lack of oxygen.

I wonder how much better this would be had I been in great shape when I started. I wonder if I should push myself harder now. I have started doing Pilates again twice a week and our last session two days after chemo felt like I would kill me. Yet I could feel how good it was for my body to move and breathe hard.

Right mow, it seems I'll never again take feeling good and strong for granted. I fantasize about running hard, lifting and climbing and moving heavy objects. We will see how I feel when I do truly have to work hard to rebuild that strength. Being able to maintain the gratitude for still having that possibility will be a legacy of chemo worth having.

So, two weeks after Christmas and I am finally writing again. Why silent? I have been busy, it's true. I am working more, getting out to client meetings doing more phone coaching, etc. The kids were both home and we saw more of them and their friends. And all of the holiday stuff took time for me, as for everyone.

But mainly, I've just been tired. The chemo, as predicted, kicked my body into early menopause (temporarily or, as hoped, permanent...who wants to go through this twice?). Suddenly, I am wake up 4-5 times a night boiling hot. Gone are the restful nights I had been having despite the chemo. Between this and the cumulative impact of the chemo, I am pretty freaking worn out by now. But here I am again, your trusty correspondent from the cancer front lines.

What can I say that would be enlightening? Chemo sucks? Think you've gotten that by now! Here's what I want to be able to say: I want to report that I have discovered the secret to wavering life when I am in pain, feel like crap, fear death. If I could do that, and teach others how to, then this whole mess would feel worthwhile. But I have discovered no magic bullet to maintain inner peace and joy throughout this. Full dislosure: I am sad, angry, defeated and crabby often. I hate being tired and in pain much of the time.

But, if I have is discovered anything, it is a fierce desire not to give up or give in to the simple logic of pain and illness. I am not willing to allow my sense of well-being to rest on how I feel. I want something more sustainable, something within my conscious control, so the quality of my day and my life depends not on how tough the chemo demons that day were, or what emotions or impulses bubble up from my subconscious.

There are many books written that purport to have this key, that tell you to "only love yourself", or "find a higher purpose" "connect with others," "do yoga", "meditate," "pray," "do affirmations to train your brain." I am open to them all, trying, evaluating. At the moment, I can say only that the effort continues and that I'll let you know what I learn. No one said this would be easy! And who says easy is the point, anyway? The adventure continues...

Colleen

Colleen

Merry Chemo Christmas!

Maybe it wasn't such a good idea to have Christmas at our house during my chemo. If I'd known how hard it was going to be,I wouldn't have done it. So I'm glad I didn't. It was actually a lot of work, and I felt terrible during all of it. Yet it was the best ever.

I worked on Friday morning and had to pick up our beef at Shop-Rite. What a zoo! I had to pee and, as I stood in line holding my heavy basket, it suddenly occurred to me that I felt pretty awful. Day 2 of chemo hasn't been all that bad, with the steroids still in your system, and I had thought was pretty safe. But this was a new drug, and they keep telling me it's cumulative and I might feel worse as it goes on. It suddenly hit me that I might be in trouble, with a dozen people scheduled to arrive expecting a nice dinner in just over 24 hours.

What has turned out to be new and special about this chemo treatment is pain! During all of Friday, christmas eve and Christmas, I was beset by aching pains in my joints. I had sudden insight into what it may be like to be 80, as I hobbled around with painful hips, knees and feet. Plus, I felt just plain lousy, fatigued and queasy, if not completely nauseous.

Yet, somehow, we all pulled off a wonderful Christmas Eve dinner. On Friday, Margaret's friends Madelyn and Judy arrived and started peeling potatoes and stayed, working hard, through dinner. With 4 teenagers and Steve doing the work and me directing from the couch, then getting up to work, burning through my short energy supply and resting again, we got everything done. We even managed to make a nice pork roast for dinner and enjoy visiting with the kids before they went off to a party. I was so aware of the joy of Christmas as we listened to pandora radio playing Christmas oldies, chopping, peeling, decorating, or just being together.

On Saturday, steve and i got up early to get the rest of the meal ready. We were better organized than we've ever been and, with more help from the kids, managed to have everything perfect when family arrived at 4. By then, I was in a lot of pain but I still enjoyed the dinner and company.

By Saturday night, I started taking Percocet and stayed on it most of Sunday. This did not make me a ball of fire and I spent most of Christmas on the couch in my jammies. But no one cared. My Dad rubbed my feet and aching knees, Margaret ran me a bath, and I basically got waited on all day. Not a terrible way to spend a holiday, surrounded by the people I love most taking care of me.

Today is Monday, and I still feel as if someone took off with my vim and vigor, but the pain is less severe. Got through the day without Percocet. The big event today was the arrival of Butters, our newly adopted poodle/jack russel shelter dog. He did manage to pee on Joseph's bed already, but we hope that's an aberration. Otherwise, he is irresistibly cute and cuddly, loves sleeping on laps and following his new people around the house, head cocked to one side as he doesn't miss a trick!

So Merry Christmas from Jersey, where the normal stress of the season seemed to pass us by, in favor of a deep sense of peace and joy. Nothing like having cancer in your midst to keep everyone focused on what's important. We have always been a happy family, but everyone agreed that this was a particularly good time. I felt more relaxed than I ever have, freed of a compulsion to keep everything running smoothly, it ran just fine without my worrying.

So, I'm grateful I didn't know how hard it would be, how truly terrible I would feel. But to quote the Grinch, "Somehow, Christmas came...it came just the same." Chemo and all...

Peace, Colleen

Yesterday was the first of the new chemo regimen. As feared, the Taxol allergic reaction business was stressful. Since there is a chance of allergic reaction, they have you take steroids in advance. In advance meant setting an alarm for 2 am and taking 5 pills, the 5 more at 8 am.

When I started the chemo, my job was to monitor whether it was making me feel anything wierd or bad. Apparently, if you get past the first 15 minutes, the odds are good you are okay. For the first ten minutes, all seemed well and I was breathing a sigh of relief. Then, suddenly, I got this really wierd flushing feeling in my chest. I was reading, so didn't pay attention at first then, when it didn't go away, hit the panic button.

This Panic button thing always gets a dramatic response. Within seconds, two nurses were in my cubicle, asking questions, looking worried and cutting off the drip. One grabbed the Benadryl and cortisone and had it at ready. I was feeling better. They phoned the doctor. Her word was to try again, at quarter speed and see what happens. Tried that. One minute in, th flushing feeling came back and I was having trouble swallowing. Stopped the meds again. This time, the doctor came herself, asked more questions and decreed they give me the Benadryl and cortisone and try again. Benadryl made me sleepy, then jumpy but, at quarter speed, we seemed okay. Only down side was I was attached to the chemo drip for 5 hours. The Benadryl made me jumpy! Legs twitchy and I was really unpleasant to have to lie still for so long. I am grateful we don't have to switch meds and derail the chemo process. Of course, this means we go through the same thing into weeks. Fun!

But today, I felt great (in chemo terms). Nausea is better, although I still have a burning in my stomach I thought would be behind me. Just another opportunity to practice letting go of what I wish I were feeling and accepting how I do. Still suck at this, but am getting better!

What life is like now...

My mother in law Leanna asked me an interesting question the other night. She wondered why, when I am doing so well coping physically and mentally with the cancer, my blog seems to focus on "the dark side." Since that wasn't my intention, here's a more balanced view of my life theses days. It's not all gory medical visits and nausea. I am doing extremely well, blood counts good, spirits good, energy as good as could be reasonably expected.

This is my life: When I got my diagnosis, I made some decisions. I wanted to keep coaching my current clients but not to actively grow the business until I was well enough to know I could handle more. My first obligation was to take care of the people and businesses I was committed to. So, I immediately ceased all marketing activities except social media and email newsletters. To reduce expenses, I reduced my team's hours and let our intern go. I moved out of my office, while having them still answer my phone and take mail.

I have shifted my bi- monthly clients to meet during the "up" portion of the 2- week chemo cycle. My clients have been wonderfully flexible and accommodating. To a person, their attitude has been "first priority is getting you well." Maybe this is not a business-like mindset, at least not in the short term! Yet, in my work with them, we try not to treat people like cogs in a machine, but to assume they are thinking, caring people. Of course, we also let people go when they can't handle being held accountable, but I always ask them as leaders to look first in the mirror when not getting the results they want from their team. So, I guess it's not surprising that they have decided to work with me as I face this shitty thing.

So I once again work from home. In the past, this was hard for me, but now I love it. I wake up and have coffee with Steve. He makes breakfast for me and for Joseph before he heads off to his internship. I write in my gratitude journal and meditate, do Sedona releasing, talk to Steve, blog, or whatever it takes to get my spirits up and ready to face the day. Depending on how I feel, this is easy or it is hard.

My days consist of a few appointments and lots of open space. On the second week of the chemo cycle, I often have 1-2 offsite meetings with clients. I try to leave the Monday after chemo open, because that's a hard day in which I might not be much good to anyone. I group meetings and coaching sessions in the other week where I can. Some days, the balance is just right. Others are very demanding or boring. I keep working to get it right.

It's odd (and very lucky) that I have so much unstructured time. On good days, I work on the house, write (which takes far more energy), cook wonderful meals, exercise and catch up on business stuff. On bad days, I read, watch old movies and sleep. It's an odd, suspended kind of life and, when I feel strong, I can start to feel guilty that I'm not doing more. Then I catch a virus, or the chemo just seems to rear up, and I am grateful I have the time to do nothing much. It's not a way of life I'd want forever, and I'll be glad when my energy comes roaring back, but it's a good life, and one I am doing my best to savor.
So, if you are nearby, please reach out and visit. All I ask is that you cancel if you are sick and that you understand if I cancel because I am. Call me. Spending some of my open time talking to old friends adds richness to my life. I am committed to investing the energy I have to building depth into my life. My son Joseph said to me the other day that is our connections to other people that give meaning to our lives. So I am strengthening the connections I have with all of you, reading fiction (which has always deepened my life by bringing of other lives into it), creating beauty and order by working on our house, cooking good meals and feeding my family, singing and writing.

One thing I know now for sure is that my time here will be too short, whether it's 50 years or 5. I still struggle with the great questions of life, with leading a life of purpose. I am too damned analytical to accept easy answers, yet I still strive for inner peace. I suspect my life will not be large, not of a scale that impacts human history in any measurable way. What has kept me from great ambition, other than pure cowardice, is a lack of certainty. I have never wanted to stride masterfully into the world, bending people and events to my will, until I knew the effects would be good. Call it the curse of the history major, but you don't have to look far to know that "great" men (mostly men) have done tremendous evil. And not one of them hasn't had the courage of their convictions that they are right. Delusional, but right.

So I wonder, and question myself. And I know, facing this cancer, that the price I am most likely to pay for this is that I will live a small and unremarkable life. My impact, like that of Dorothea in Middlemarch, will be like the force of a great river broken into small rivulets, impacting other lives on a small scale, where I can have at least some confidence of doing little harm. Even there, it's tough to tell. Any time a business owner let's someone go, makes a major investment, chooses not to act, I know there will be ripple effects neither of us can see.

So that is my life right now. Who knows, maybe the book I plan to write, the direction I take my business when I get well, a complete change of plans or circumstances, will change the trajectory and find me on a larger stage. It would be cool and wonderful to know I am making a large impact, so long as I don't forget the blinding and intoxicating nature of power. Even Frodo could not destroy the ring at the end. It was only his compassion and humility, in the form of the broken and valueless life he spared, that saved him and the world.

True greatness requires humility and I am coming to terms with my own weaknesses as I fight off this nasty disease and hope for just a bit more time to figure a few things out and do what I can to leave the world better for having passed through it. Don't we all?

On loss and gain

Yesterday was the last of the first half of my chemo treatments. In two weeks I start with Taxol. Nausea is not as big a problem with that drug. As I sit here battling the queasiness that's been my daily companion for two months, that sounds like really good news! The bad news is that there is a high risk of allergic reaction. That means you take steroids beforehand and then they titer the drug into you over 4 hours, watching carefully for any reaction. If you feel anything odd at all, they intervene by pumping other drugs into your system to combat the allergic response. If it's really bad, they stop the drug, but I get the feeling it has to be pretty bad.

Russian Roulette with anaphylactic shock. Anyone want to do it for me? It sounds both terrifying and stressful. It makes it my job to monitor myself and report to them. Call it too close, and I get pumped with bad stuff that makes me jittery, unable to sleep, and God knows what else. Call it loose and I'm toying with serious allergic reaction. Ever read a description of what anaphylaxis actually is in your body? Don't.

After 4 treatments like that, with two weeks in between as usual, the chemo phase should be over. With great fortune, forever. Those of you praying for me, and I know there are lots, that's what we are aiming for!

After that, I will have a mastectomy, probably just one, or maybe two, depending on the recommendation. I haven't really looked into the data on this and it depends on what they know about the likelihood that this cancer is already hiding in the other breast. No sign of that, but we can't see single cells yet. Since we know it's in my lymph system, the cat is out of the bag and the likelihood of cancer cells lurking pretty much anywhere is high. If the chemo and my immune system don't kill them, they will pop up one day. Unclear whether chopping additional parts off makes a big difference. Modern thinking about cancer is that it's a systemic, not a tumor disease. The underlying conditions that allowed it to occur and the body's lack of adequate response have to be addressed. But we know very little about either.

This aside, there is that one mastectomy to face. And what a thing that is. I've been thinking of the harrowing scene in The Pawnbroker, where the victim of Nazi medical torture realizes they are removing a piece of his hip. And it is this, more than the agony of everything done to him so far, that breaks him. The permanence of it, the knowing that this is something that will never heal, that they are succeeding in taking away a part of him and never giving it back, that breaks his will and his heart.

I draw no parallel between the two situations, except the profound psychological impact of permanent bodily loss. For me, there is the possibility of reconstruction, about which I hear decidedly mixed things, from it's great and you end up with "the boobs everyone wants" (actual quote from survivor friend of friend), to "wish I hadn't done it." (actual quote from survivor sister of friend). Sigh...

But that doesn't change the initial grief of letting go of a familiar and, if not essential (I've never been one to build my self-worth on my boobs - never had such great ones to build it on, so that was easy!) body part that hurts. And I'm not without vanity (for sure!). I've never been a great beauty or head-turner, but I know Idid fairly well in the genetic lottery, thanks to my lovely mom and handsome dad. There have always been people in my life, especially those who not limited to media-driven ideals of attractiveness, who have called me beautiful, and I like it. Who wouldn't? But it is something we trade in life, currency paid for the privilege of time. Cancer just makes the choice more stark, and more deliberate.

Temporary baldness, circles under the eyes, older looking skin are the first wages paid, the first obvious reminders of the ultimate equation. Now, Botox and liposuction have never been my plan. My concessions tithe cultural obsession with looking young include hair color and oil of Olay Regenerist. Not t say there won't be more of this ilk, but I'm basically planning to age gracefully.

But mastectomy raises the bar pretty massively. It's not a normal event, like wrinkles and sagging, something we all face, it's a special choice. Like chewing off a trapped limb, the conscious decision that your survival, your life, your future, is worth more than this thing you once thought was yours, is a "part of you" has to be faced.

So I'm starting to mourn for my lovely left breast, which will no longer be mine. I honor it for the tough duty it survived, stretch-marked and weary, from two pregnancies and feeding two babies. I will miss its easy, swelling, cleavage, found only recently when my breasts followed a family pattern of growing in my forties. I will miss it as one of a matched set that reconstruction, were I to choose it, won't fully replace.

What I hope, is that its absence will serve as a reminder, a small war monument embedded just above my heart; like all monuments, a deliberate act of storytelling that creates meaning behind the suffering. I hope the scars, or even a fake boob, will help remind me of the value I placed upon my own life. It will call to my attention daily to the priority I gave to more birthdays, more graduations, more people coached, taught, changed by my efforts, more people sung to, more beauty created, more writing done, more friends and family given my love. It is a gift, this monument to my choice.

So I say "bring it on," grief, pain, scars and all. And I will learn to love the lessons, so hard-won; on letting go, moving on, embracing life, maybe more than I ever appreciated that mammary gland of mine. A fitting honor for a pretty nice breast that didn't get half this much attention during its lifetime, wouldn't you say? LOL!

Colleen