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