Sweet consolations...

Colin left Friday afternoon, right after I got back from my wonderful oncology massage. I was totally relaxed, sad to see him go and grateful for a really nice week with my little brother. We hadn't spenr that kind of time together since we were kids and we got along very well. He is a big animal lover, so Butters got another fan. He was a great caregiver and companion. Such a nice opportunity that came out of this mess. It was interesting being on my own for a half day. In the end, it was fine, but I realize how spoiled I've gotten in having someone around to walk Butters and get things for me when its so hard to move without pain. It makes me grateful that my family has insisted on my being accompanied throughout this time. At around 10:30 p.m., my friends arrived. They had managed to coordinate themselves to arrive from Boston, San Francisco and Jersey into one rental car. I can't even begin to tell how great it was to have them here. I've known Kristen, Susan and Bridget since we moved to Andover, CT when I was 3. Jacqueline joined the party when we all went to the regional junior high at age 12. So, we knew each other when. We started by getting into bathing suits and taking Butters out to the pool, where he isn't allowed. We happened to encounter the man who had just turned out the torches. He apologized and told me the dog wasn't allowed. I smiled and said "I know," at which he shrugged and left. I have changed. I think it can be filed under "things you finally realize you can't control," and I find I just don't seem to care as much how people think of me. While I can see why they have the rule, I can also see why it works best if not well enforced. If someone cares enough to complain, or if others with badly behaved dogs start to bring them in, then I'll put Butters in his crate. Until then, he seems to spread a lot of joy at the pool, as people laugh at his comical greetings and obvious happiness to be there. So we sat on the pool steps (I still can't swim but they did,) in the dark and relative cool (I'd guess around 90 degrees), and started our visit. Not all of us have kept in touch, so we had some catching up to do on families, careers, living arrangements, etc. We had decided to bunk in, despite not having quite enough beds and (to my embarrassment,) blankets. Nonetheless, by midnight, all were settled in under sheets on the beds, aerobed and couch. This is kind of a funny way to entertain. I mean, I had very little in the house ready for them, not even blankets! Yet, they weren't in a mood to complain. It wasn't the point and it was a little weird, a situation in which there isn't a norm to follow. Despite this, or maybe because of it, we had an amazing time. In the morning, Jackie drove all of us to drop me off at acupuncture and they all went out for breakfast. Their massages started at 11 a.m. and I got a kick out of seeing each of them return with the identical rosy, slightly puffy and wide-eyed look of someone just awakenEd from a lovely nap. It was great that the massages forced us to do nothing but hang about all day. One essential trip was made by Kris and Jackie to Bevmo to get the ingredients for Margarita's, prepared by Sue. I took a nap while they sat by the pool and we headed out for dinner at 7. Nobuo was recommended by Kris' friend who lived in Japan as some of the best Japanese food in the country. We couldn't get a reservation but were told we might get into the lounge if we just showed up. We seemed a little late for that, but pressed ahead. I think we all envisioned being crammed into a bar around little tables, rubbing elbows with strangers. When we got there, we were shown right away into a separate room with a leather couch, little ottomans and a coffee table, all to ourselves. The building was turn-of-the-century brick, with 14- foot ceilings, skylight transoms and original woodwork. Settling in with really great cocktails (just sips for me after a Margarita) that tasted tangy and of jasmine tea (only Sue's wasn't great, tasted of soap), we looked over the menu. It's my favorite way to eat, with small dishes meant for sharing. I was content to let everyone else order and, with a total of 11 small dishes for the 5 of us, our feast started to arrive. What a totally perfect evening. The food was fantastic, interesting, fresh, yummy. My favorites were a watermelon salad with chèvre, soft shell crab salad and sea bass with enoki and morel mushrooms that just melted in your mouth. We split the only two desserts on offer, an incredibly smooth chocolate mousse with green tea ice cream (perfect) and almond beignets with caramel sauce and ice cream (divine.). Lots of laughs, love, photo-taking and the perfect amount of fabulous food. It helped that I was on oxycodone for the pain, I'm sure! Sunday morning was rough for me. The antibiotic and niacinamide I take make me nauseous and I have to be super-careful how I manage it with anti-emetics and eating enough. I was sloppy and paid the price. Hard as it was, it was very sweet to have Sue rub my back as I retched and sobbed over the toilet. It's not just the great times that make you appreciate your friends. Oddly, though I didn't vomit, just the retching seemed to help and I felt ready for our outing. The Heard Museum of Native American art and history was great. Sue was smart enough to suggest a wheelchair and I was smart enough to go for it. After a nice lunch in the cafe, we spent a few hours in the museum. Kris adored the Kachina dolls in particular and Jacqueline, who studied Native American dance, was really psyched to be there. My Mom called to say she'd arrived and we managed to get her into my apartment to wait for us (where she immediately started ironing, bless her heart!) We probably stayed 30 minutes too long because I started feeling a bit desperate for a rest, but I'm really glad we went. When we got back and I had another nap, we headed out to Cafe Barrio for excellent Mexican food, sad and sweet goodbyes and they were off to the airport. Mom and I are having a great time. She came with me to treatment and sat there as I slept. Obviously, visiting did take up some energy, since I slept in the treatment chair from 7:30 to 12:00, right after a good night's sleep! My lung still hurts since I can't drain it fully, but the catheter infection seems less sore. It's nice to have a quiet day, but I am so, so, so happy my friends came out. It was one of the happiest, sweetest times ever, one of the great things that can come only from adversity. Can't say it's worth it, but it's a tremendous consolation. Thanks again!!!!

Two big days in a row...

Lots of news. After my IV vitamin C treatment yesterday, I felt so good I decided we should drive to Sedona. We headed north around 10 a.m. What a drive! The scenery keeps getting more spectacular as you go. In an hour and a half, we hit red rock desert, stopped to buy hats and get a map at the visitor center and admired the incredible view. Next stop was some chapel. You drive up around the bend but then it's a fairly steep climb around a paved path to the top. I felt like I could make it and did, even under the broiling sun. A bit cooler up there, it was still what a northeasterner would call HOTTT.

On the way up, I glanced at Butters, who was looking very worried. His head turned around pleadingly, hunched over and delicately lifting one paw after the other, the poor thing was being burnt! Steve scooped him up and all was well. After the chapel, we headed up to Sedona itself. The tiny town is quite touristy but not terribly tacky. Steve parked the car while Margaret and I sat in an outdoor cafe under big, yellow umbrellas. Lunch could not have been more perfect. The service was incredibly friendly, the food delicious, the breeze kept it from being too hot, and they provided water for the dog as a matter of course. Mexican food, very fresh and delicious. Yum! We headed farther North to Slide Rock state park. What a blast. Although we couldn't take Butters down to the creek, we took turns and even I managed to do a little sliding on this natural water slide where the creek runs over flat, smooth rocks. The water was 63 degrees and unbelievably refreshing under the hot sun. I can't wait to go back when I have my catheter out! Margaret and Steve were able to slip in and out of the pools and get really wet. Soaked and happy, we headed north yet again to loop up and catch 17 south. On the way, we passed through even more microclimates, including a pine forest that seemed positively Alpine if you didn't open a window. On our way back, we stopped again to show Margaret the cliff dwellings at Montezuma's Castle (I called it Table in error before.) I felt strong enough to walk in with her and see it again. Glad I did.

 We got back to hotel, dressed in a hurry and met Jeff and Dian Weisman for dinner. Jeff was my Master licensee with ActionCOACH and I haven't seen him in ages. They are both wonderful people and we enjoyed a really good Thai meal. Jef and I agreed to get together again before I leave to reminisce and talk over all the stuff that bores everyone else silly.






 The big news for today is that we moved! Thanks to my wonderfully generous in-laws, we are out of our tiny hotel suite and ensconced in a furnished apartment. The only ones in the area are called, accurately LUXURY and we are feeling well and truly pampered! Margaret and I can't wait to use the two pools, spa (very inexpensive massages) free yoga and zoomba classes. Plus, their smallest unit has two bedrooms and bath, so we are much better set up for all the wonderful folks coming to visit and/or look after me. I was starting to feel claustrophobic after just two weeks sharing one room. Even with a suite, there were no walls and nowhere to escape if you couldn't sleep or just wanted space. I feel better already! To see the place, click Video Tour of Sage Apartments

Margaret/Maggie arrives out of the blue....

My platelet count dropped, so they have given me an extra injection this morning and want me on more b vitamins.  With this, plus the antibiotic they’ve added, my biggest challenge is nausea.  I am glad to have the Compazine and Zofran left over from sloan kettering. 

The big development is that Margaret is here.  She decided that she wanted to be here rather than in London doing the internship.  Yesterday, while we were at Staples faxing invoices to the insurance biller, we got a phone call from her saying “I’m at JFK and will be there at 10 tonight.”  Wow!  Fortunately, Ann and Jef (with whom she is doing the London internship,) were not only understanding, but encouraging.  Ann, with her Irish belief that too much hope tempts the Gods, thinks I am definitely dying.  Incredibly generous as always, she put Margaret on the plane.  What a friend! 

We are more positive about my expiration date, but understand how Margaret would want to spend time with me either way.  It’s not clear yet how long she will stay.  She wants to stay all summer but may change her mind if I am doing better, or being here gets too boring and depressing. She’s welcome back in London anytime.  My preference would be for her to be there (not for me, but for her), but she knows her own mind and heart and I respect that.  Plus, it’s great to have her around.  She’s a great caregiver, compassionate but calm and level-headed.  We are invited to Aunt Margaret’s for their annual Father’s Day get-together on Sunday, and it will be nice to finally get the two Margaret’s together and to meet that side of the family.

A story I keep forgetting to tell…the Whopper Junior.  The day I decided to come out here for treatment was not easy.  I knew the process of pulling together my records and sending them here would be anxiety-producing, so I asked Devra to come up and help.  She was a great comfort as we dug through all the paperwork and found the key tests and bloodwork they wanted.  I also had to write a bullet-point summary of my cancer story.  Going through all this again felt like someone had picked up a smelly, filthy lead-lined overcoat out of a dumpster and threw it over my shoulders. It brought me to my knees, with feelings of dread, rage and grief overwhelming me.  By the evening, I was in a foul and fragile mood.  All of a sudden, I announced to Steve, “I want a Whopper Junior!” (At the time, I was still on a vegan diet.)  In two minutes, he had googled the nearest Burger King.  My inner two-year-old in charge, I replied “Forget it, it won’t help.”  He, wise man, just waited.  A minute more, and I said grouchily, “Okay, let’s go.”  Driving through the dark, I just let go of any dignity or reserve and wailed. I keened in fear and rage, an inchoate protest that doesn’t hope to be heard and doesn’t care.  Finally, I took a deep breath.  Shakily, but firmly, I said “Okay.”  Pause.  “Okay.” And it was.  We got to the restaurant, Steve ran in and, in just a few minutes, I sank my teeth into burger and fries.  Heavenly. We laughed on the way home, me feeding Steve fries as he drove.  Sometimes, you just have to take a break from being good!

So treatment continues apace.  I am hearing good things about this place from people here who’ve done much more research than I did.  They seem to have a good record of success, and I am talking today to a woman who had lymphoma and was here 8 months.  She is now on follow-up and doing wonderfully.  She looks like a million bucks.  Always good to see!

Catheters, sightseeing and friends and family...the bad and the good together

As I lie here writing this, I am deciding whether to have the pleural catheter removed from my lungs, even though it is still draining. At this point, the pain where the catheter emerges from my chest is the biggest problem I'm facing. It keeps me from exercising, or even walking, swimming or stretching. Unfortunately, we thought we were close to getting it out because I was draining far less from it. But this morning, it was suddenly 100 ml again. This isn't a ton of fluid, but it's in the wrong direction. The risk if I have them take it out is that the lung will fill up and need to be drained again. Worse, they could want to put a catheter back in. That's a tough thought to face. But I am starting to fear that this thing is a big obstacle to my getting better. Lying about is not healthy for me. Beyond this, it's been a nice few days. My friend Jacqueline arrived Wednesday evening and she and I had a great dinner out. On Thursday, I had chemo and then Steve drove us an our north to Montezuma's Table National Monument. This is the site of ancient cliff dwelling, something I've always wanted to see. It was incredibly hot, but we walked slowly around the 1/3 mile circuit, resting in the shade. Very cool. After a great lunch in a hole-in-the-wall Mexican place Jackie found with Siri, we drove to Montezuma's Well, an almost circular pond around which the same people lived about 700 years ago. I felt well enough to climb all the way down and back up. I took pain meds for the ride home. After dinner, Jackie and I went to Applebee's for karaoke. I sang twice. I was super flattered when the DJ clearly enjoyed and complimented me on my songs. It was Jackie's suggestion that I sing "over the rainbow" and there was a big round of applause afterwards (most of the singers were pretty roundly ignored)' so that made my night. Today, we drove 2 hours to Tucson and had lunch with Steve's aunt Margaret, her husband John and daughter Lynn, neither of whom I'd met. It was a lovely time. Butters was a perfect gentleman. I feel a bit better, so going to go out and walk around the pool in the warm night air.

Home sweet home....Quick update

I am home from the hospital. Hooray! It wasn't bad, actually. The staff at Overlook in Summit were wonderful. Even the folks cleaning the floors made it a point to be friendly and kind. But after three nights, I'm relieved to be home. Change of treatment plan. I am not yet sure if the fluid in my lungs has cancer in it, but I am assuming so at this point. Because of this, and due to the cancer in the skin around the incision, I will be put back onto IV chemo starting Wednesday. Not the same drugs as last time (more info on that soon). Not good. May consider a clinical trial. Butters refused to look at me when I got home. I let him out of his crate and he grabbed his toy and went the other side of the coffee table to chew on it. He only came over to see me when I called him. Resentment seems a pretty sophisticated emotion for a dog, but it was clear he wasn't pleased with me. I have now been fully forgiven and her is following me about. What a bummer for him to have me simply disappear for almost 4 days! The other thing worth noting is that my chest X-ray this afternoon was clear - no fluid building back up. It's still hurts to take a deep breath as the lungs unsquash themselves, but there is no longer a stabbing, impossibly painful spasm when I inhale quickly. This had made laughing, crying or any sudden movement very scary. Glad that's over! I do cough when I take a deep breath, but it's getting better quickly. At the moment, I am feeling good, with almost no pain, no nausea, and a good end-of-day tiredness. This, I appreciate!

Breathing is a beautiful thing...

Great truth for the day: life is easier without two liters of fluid in one of your lungs. That said, it's not so hot to get the fluid out of there. The first try was yesterday morning. It sounded easy enough, a simple procedure to do right in the room. A little local anesthetic, a needle inserted into the lung through the ribs (ugh) slide in the catheter and drain the fluid into bottles. I sat on the bed and leaned my arms onto the tray table. The local injection hurt, but it seemed okay. I felt reasonably calm and looking forward to getting it over with. All of a sudden, I felt lightheaded. I tried to ignore it, but it got worse and worse. I had to fess up and they helped me lie over onto my side. I felt terrible, but better with my legs up. I lay there giving myself a pep talk to get this over with, slowly sat up again, and the doctor reinserted the needle. Instant blackout reaction. I was sweating, leaning over the tray table and praying to make it just the few more moments needed to get the catheter in and draining. I couldn't do it. I was shaking, crying, and almost unconscious. They lay me down on the bed, making apologies and telling me this happens, I shouldn't feel bad, etc. As if my biggest worry was whose fault it was, rather than that I'd just gone through Hell and still had all this crap in my lung! They were able to get enough fluid to send out a sample for testing. Choices of why this happened include cancer in the lung (bad, bad, bad), infection (unlikely), and injury. Not worrying about it. Results in a day or two. It took a long time to sort out plan B but they finally told me I'd have it done the next morning under sedation. Although this meant no food or drink after midnight, I was thrilled at the idea of being under during the drainage. I slept well. This morning they came to get me at 8:30 and wheeled me down to cat scan. I lay there for awhile on a stretcher until the nurse came and described the procedure. As I listened, I realized she hadn't mentioned any sedation and asked. When she said no, an "Oh no!" burst out of me, in a voice obviously fighting tears. How embarrassing. But how crushing, not only the thought of the whole nasty thing, but what if I fainted again? Karen was very reassuring, putting on a blood pressure cuff and telling me she would get me through it. I had to lie on my side and get a cat scan first. To give you an idea of the state of things (me), they wouldn't let me get up or help myself onto the table. They just slid me around on a board like a big sack of meat. Okay, so here we were again. Not to whine or anything, but I wish they'd give you pain meds for the damn numbing injections. It hurt, and it burned, and I've just had about freaking enough of this crap, okay? But I have to say, he worked quickly and well and the catheter was in very quickly and, hallelujah, we were draining! Then Karen told me that I might start coughing when the fluid drained and the lung started to expand. Thank God for the warning. Lying on my side immobilized, I coughed, coughed again, and then again. And I was coughing hard, unable to catch my breath, fighting panic. "Breathe out like you're putting out a candle" and I was brought back to LaMaze class as I puffed away, squeezed Karen's fingers, gasping, whimpering, trying not to panic. Somehow, I got through it and we we done. Two freaking liters of fluid in one lung. The fluid builds up between the pleural sac that encases the lung and the airways. My poor little airways, squashed in by all that water, we're basically collapsed. Lying there, every breath hurting and feeling pain I my shoulder, hip, back, it was easy to think something had gone wrong. But, as soon as I could stand it, they shoved me back into the scanner and announced that all was well. The lung reinflated fully, my cheeks looked pinker. Success! Getting the lung back to normal ain't going to be a picnic. Good news is there is no pain when i breathe normally. But every deep breath hurts a lot. And, a sharp intake of breath to laugh, cry or just move quickly creates an unbearable spasm. So I am on Percocet to take the edge off and instructed to use the incentive spirometer to stretch the lung tissue back out. As I write this, I am sitting up in a chair and feeling quite good. I can walk around my room and no longer have to cough every time I say more than 10 words in a row. The pain when I breathe in is getting better. Home tomorrow! Despite the lousy news, I am cheerful, even joyful. For the first time in my life, I feel fully justified in living one day at a time. Doing my best not to worry but to work hard at getting better, staying a step ahead of the cancer, hoping for extremely good luck and loving being alive. Time flies...off to my breathing exercises!

Why I love my cabaret class...

Just got back from cabaret class. I am enjoying it more than ever because I now sing without fear of failure. I am just beyond worrying about sounding perfect or being judged. So my friend Jill asked if I'd try singing "I will always love you" with her as a duet. When I got up to the mike, I said I'd need some time to work on it because I don't really know the song. Our director Maria wisecracked "You've got one try, Colleen, just get it right!" so I took of my baseball cap to expose my shorn head and shouted "hey, don't you know I've got freaking cancer??? Maria shot right back "God, I'm so sick of hearing about that!", so I pulled out my fake boob and threw it at her head. God, I love that class!

Healing is for the body and the mind...

In every crappy experience, there is something to be learned. For me, the lesson is patience and the experience is recovering from surgery and chemo. I am healing well, but it sure does take time. The other thing I had to re-learn is that not all the wounds are physical. Once the surgery was behind me with no complications or problems, I expected to feel better every day. Instead, I woke up on Saturday and Sunday feeling more exhausted and lousy than before. Not only were various drugs working their ways out of my system, it finally dawned on me (maybe it was bursting into tears when I couldn't open a jar that gave me clue) that I had some emotional healing to do. All the anxiety leading up to surgery, the loss of my breast, the pain, the frustration with hospital incompetence, all of it took a piece out of me and I needed some time to grieve and to heal. It's funny but, once I knew what was going on, it got immediately easier to bear. I wasn't having a physical setback, I was just handling the emotional fallout. My psyche was drained and needed (needs) time to heal. This is still going on, but every day gets easier. As I said, my body is healing fast. I got rid of the my drains on Tuesday, 6 days after surgery. I could have gotten rid of them sooner, since the amount of liquid was below the minimum, but they weren't bothering me. And then, suddenly, they were driving me nuts. I actually think they are great technology, and pretty cool, if entirely disgusting. For anyone who hasn't had surgery, or helped a family member, the drains are catheters inside your surgical site that hang outside. The plastic bulbs at the end are compressed and exert a gentle suction that pulls blood and pus out of you. You, the lucky patient, get to empty them every morning and evening and record the amounts (so they know when to take them out.). The way I figure it, better out than in, and it meant in my case that the incision barely leaked and no bandages needed changing. Still, it's a relief not to have two orange-sized balls hanging off my left side. Back at the hospital, when we first peeked under the bandages and saw the flat area, I cried and Devra cried and hugged me. Then I had a few days to get used to that. The next step was to remove the surgical tape on my incision and get a real gander at my chest. I must tell you, no lie, it is UGLY! I mean super awful, 5 inches long with lots of little lumps and bloody yucky stuff showing between the stitches. And it's not just flat, it's concave! She took the tissue right to the bone, so there's not even any muscle there. Im going to be honest and say it grosses me out. Steve doesn't seem to mind it, he's just so delighted that it looks so healthy. The bruising is fading, as is the swelling, and it will soon be a nice, neat scar. I will get used to it. Every day, I have a set of exercises to get the range of motion back in my arm. Ouch is all I want to say about that! Yesterday and today, my wonderful Pilates instructor worked with me on the rest of my body as well as my arms. I am mainly down to ibuprofen and Tylenol for pain during the day. We just took a walk by the reservoir and I'm pretty uncomfortable from the jarring. May take some Percocet now and more at bedtime. Now, if I could just stop waking up every few hours with hot flashes..... Lol. Colleen

Amazon on the mend...

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

Last thoughts before mastectomy...

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

Surgery is scheduled...

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

What 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

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

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!