First day of treatment

First day of treatment. The place is 5 minutes from our hotel and we arrived at 8:30 a.m. I was able to eat at 5 but fasting since then. Hungry! We were welcomed by Janice, one of the many warm, relaxed and cheerful people we met there. I filled out paperwork, including a 14-page medical history. One thing you notice about allopathic or wholistic providers is that they care about a lot more things. They want details on what you eat, how much you exercise, sleep, tons of symptoms other providers don't ask about. It's a pain, but does make you feel looked after at a whole new level. We then met with Dr. Deane, the director who admitted me, and Dr. Zieve, who will take care of me. Anyone interested can read his book, Healthy Medicine. One jarring question was "why did they do the mastectomy?" If the cancer is already beyond the breast, then a mastectomy is not indicated, apparently. Our answer was that they thought it important to remove the initial tumor. They said nothing, but its apparent from the result, that I would have been better off without the surgery. Grrr! it was reassuring to once again hear Dr. Deane say that they have had "good success" with triple negative breast cancer. Glad to hear someone has! Anyway, after paying by credit card for a week of treatment (some, but not much of which will be reimbursed through insurance), I spent a few moments envisioning our retirement spent working at Wal-Mart and living in a trailer park, then focused back on the idea of living to retire at all! My main treatment today was IPT, the insulin-potentiated chemotherapy. I was worried about this and made Steve stay, but it was easy. they accessed my new port (still sore and not psyched about being stuck with a needle, but oh well), took some blood, gave me saline and then delivered the insulin. Shortly after this, which left an odd taste in my mouth and made my heart race slightly, she gave me the chemo. they are able to deliver a cocktail of 5-6 chemo drugs that they find work well in synergy. You can't do this with normal chemo, as it will kill you dead. Then i could eat. Yay!!! they followed this up with oral supplements (broccoli extract was one!) and the "pink bag" of IV vitamins and minerals and I was done. We were there from 8:30 to 1:30 all told. I feel good, my lung drained only another 50 ML today, and, provided this stupid rash goes away and the catheter entrance heals up, i should be able to soon stop moving around like an old woman, slightly hunched over to not pull on the tubing, and slowly, not to jar my poor, sore side. For someone who walks fast as a matter of personality, this has been a drag. We went out to Wal-Mart to buy hats (we have a magnificent collection of hats at home that are, alas, at home, and various household things you need when you move via airplane and don't want to lug around, say, dishwasher detergent. On the way out, Steve encouraged me to get the pedicure I was coveting. I had removed the polish and, in a fit of detox-thinking, resolved to leave them plain. Alas, the chemo has damaged the nails, so they were discolored and yucky. I found it depressing looking at my feet. So now, I am sipping a very tiny glass of wine and admiring my hot pink toenails. A very lively color, a spunky color, a color for a woman who plans to live a Hell of a long time. Steve said he loves them, that they are a sign that we just left the bottom behind and are on our way up!

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!

Radiation for Fun and Profit...

Radiation... Yesterday, we met with the radiation oncologist. I found myself ill-at-ease even walking into the building and at the thought of radiation, even knowing nothing but talking would happen today. They were running behind, so my mom and I had much time to grow more anxious or soothe ourselves in. I did some of both. I struggle to know what I want to say about this meeting. The nurse was lovely. Listening to her recount the clinical story of my cancer was not. Somehow, hearing it all again, even (especially?) stated in such a calm and matter-of-fact manner was horrifying. It made me realize how much I have managed to put out of my head. I know they need to be accurate, but I'd bet good money it disrupts the healing process to have your nose rubbed in it all over again. When we finally got to see the doctor, I liked her instinctively. A comfortable woman in her fifties with a relaxed manner, She was the easiest of my three doctors so far to talk to. Again, she reviewed my story. She asked me, "the involvement of the lymph nodes in the neck, you understand the significance of that?" I found myself nodding quickly, jumping in before she could tell me again what I know and want not to. "Stage 4" those dreaded words. And I can hear her voice and those words "the significance.". How to explain that I have chosen very consciously to give I no significance whatsoever. The best response comes to me only now. "Yes, I understand, and I've decided to live anyway!" After examining me, that dreaded palpitating of the lymph nodes, the feeling that my life is held in the tips of those gently probing fingers. The silent prayer, "please find nothing, nothing nothing." She said nothing. After I was dressed, she came back and sat down looking grave. (I had to stop writing then, finding myself unwilling to relive this experience, even for you, my loving friends.) Here is the upshot: the radiation to my neck will destroy 10% of my lung capacity. Because of my asthma and the pneumonitis after chemo, there is a chance I will feel the impact of this. There is also a 30% chance of developing thyroid problems years from now. But the radiation increases the odds of survival significantly, so we go ahead. On Tuesday, I will have another pet scan. If they see cancer in the neck lymph nodes, they will increase the dose of radiation. God Forbid. If not, it's more good news. So, another test, another opportunity to battle back the terror demons. On the same day, they create a mold of my torso to immobilize me during treatment and place tiny marking tattoos to guide the rays. I never did see myself as a tattoo candidate, but there you go! Then there is a trial run visit and I get 6 weeks of radiation 5 days a week, longer if the pet scan looks bad. Because there was cancer in the skin, they will concentrate more radiation there, and I am likely to blister as well as burn. Looks like it'll be back to the Percocet. And then there is the fatigue. Yea! So, being honest, I am dreading this. And, I am working hard to enjoy life anyway. I feel really great. Today, I worked a 7-hour day plus an hour of treatment, walked the dog twice, did a cardio workout and even blogged. And all that after a really lousy night's sleep. Not too bad. Steve should be home soon from 4 days in Houston and I am looking forward to seeing him. Thanks, Mom, for coming down while he was away. Nice to have company, even if I can do for myself now. More on radiation as it rolls out. Wish me luck!

One more thing they don't tell you...

So there is this dirty little secret in the mastectomy world. Its called lymphedema and it's what can happen when some or all of your lymph nodes are removed or damaged by radiation or chemo. More info is available now ha here used to be, but it's surprising how little you hear until you are in it. I'm no biologist, but I think it works something like this: The heart pumps blood through the blood vessels out into the limbs and back again. As it flows back and forth, about 20 liters a day (20 liters...think 20 bottles of seltzer!) of fluid (plasma) leaks out into the interstitial fluid soup in the body. There it does many important things, like delivering oxygen to organs. Then about 17 liters get reabsorbed into the blood. In case you didn't notice, this leaves 3 liters that didn't get reabsorbed. That's because every day, about 3 liters end up rerouted and cleaned by the lymph system. The lymph system is a bunch of tiny tubes that run just under the skin and flow only towards the heart. They connect to nodes under the arm, groin, neck, etc. that act like filters, killing foreign cells and reabsorbing proteins before dumping the "clean" fluid back into two big veins in the neck area. While it's in the lymph vessels, the fluid is called "lymph", just to be confusing. Mostly, it's all water with stuff dissolved in it that flows around and around. This is why it's bad when cancer gets into the lymph system. It's all connected! So this is all a wonderful and delicately balanced system. When we remove a big section of lymph nodes in the armpit, it means that the blood vessels are still bringing fluid down the arm, and leaving a portion of it to be brought back by the lymph system. But the main filter/infection fighting depots are gone. So the lymph has to find another route, and it can easily back up, causing painful and ugly swelling of the arm. Aren't you glad you know about this? I am not. My left arm has moderate lymphedema. It's hard to see if you aren't looking for it (for which I'm grateful,) but it feels uncomfortable and I know it's a chronic condition I have to manage for the rest of my life. This means, at the moment, daily treatment for two weeks at 7:30 am. Treatment consists of special drainage massage, compression pump and exercises, then encasing the arm in a tight elasticized sleeve during the day and another thingie at night. With luck, this will get the swelling down and I'll just be able to wear the sleeve to exercise and on airplanes. Its not a big thing. But it feels odd, after such a healthy life, to have this thing to worry about. It makes me feel old! I've taken off my wedding band for good, have to wear gloves for gardening or working on the house, and never let a manicurist cut my cuticles! This is because healing is compromised and can also cause more fluid buildup. Hey, I'm not complaining about a relatively minor addition to the tab for staying alive. But this side effect is really downplayed in discussing mastectomy. The people who got me motivated to seek treatment were Carol and Kay, two friends of my mom and breast cancer survivors. They warned me that I'd have to address this myself and to take it seriously to keep it from getting out of hand. I feel empowered to be taking care of myself in this way, and grateful for my own personal set of Wise Women standing guard for me. Other than this annoyance, I am feeling great, lifting weights with my LiveSTRONG class at the Y, walking every day, eating well and losing weight. I finished my prednisone taper and am officially drug free! In two days, I meet with the radiation oncologist (managed to get that appointment moved up a bit) and think that radiation will start within a few weeks. I have decided to embrace my inner warrior in thinking about radiation. Six weeks is not a long time. Sore and blistered skin, fatigue, nausea...been there, done that! Bring it on!

Life is good...

In between surgery and radiation there is...life! I am off dairy, sugar and reined starches. Last week, Steve wanted to make a simple pasta dish with kale, onions and garlic. But I, always having to raise the bar, find a vegan recipe for creamy kale pasta sauce. Honestly, the picture looked delicious....Poor Steve! Here he was, after a long day, following my directions given from the couch. If I weren't in some kind of delusional state, I would have known that any roux made with olive oil and almond milk was a BAD idea. Then, I asked him to chop the kale in food processor and add it in, sort of boiling it. Another bad idea. Long story short, after almost an hour of work, he brought to me with the heartening comment "I don't know, Babe...". I took one bite. Disgusting! I felt terrible but, far from being angry Steve looked, well...relieved! I started laughing, really laughing hard. We both laughed harder and harder as we dumped the revolting, gluey, smelly mess into the trash. In fact, we laughed off and on for about two hours. The thought of Steve valiantly cooking away while trying not to gag and me cheerily calling out instructions....hilarious! We called both kids to tell them how ridiculous their parents are. The laughter did me far more good than that food would have, believe me. This week, Steve was traveling, so I went to stay with my parents for a few days. My wonderful Dad drive 3+ hours each way to come get me and Butters. What a great time we had. I got there on Sunday, my Mom and I walked the dog to Whole Foods and she made us salad for dinner, along with the chicken my lovely friend Priya had dropped off as we were leaving Jersey. I am so well taken care of! In two full days there, I managed to have dinner with 4 wonderful high school friends, lunch with 6 Keenan relatives, dinner with my cousin Lynn, and get a lymph drainage massage and education on lymphedema at the health building next door. My parents live in a wonderful condo right in downtown West Hartford that is just the best place to be. I'm tempted to go up there again next week when Steve's away again, but it's a schlep and I hate missing my activities here. Speaking of which, I went to my first LiveSTRONG fitness program at the YMCA. This is an awesome free 3 month program for cancer survivors to get back into shape. Most of the folks are much older than me, so I look pretty strong. It actually made me feel great. The fitness tests were pretty easy, I can stand on one leg for a minute, walk for 6 minutes, bench press a decent amount, etc. Seeing just how tough this disease and the treatment can be, I feel grateful to still be so lively and strong. In fact, I feel terrific right now, energetic and strong. I'm looking forward to really getting fit. It will be interesting to see how the radiation affects me, but at least I have a few more weeks to strengthen before then. It is odd being at the gym after my mastectomy. I don't want to bother with my fluffy, somewhat itchy fake boob, so I am simply lopsided. I simply forget this fact for most of the time, then remember and feel a bit awkward. I am finding being one-breasted harder than being bald, I'm not sure why. Maybe it is that being "disfigured" is simply more brutal. I mean, it's a form of amputation, and I think we all have a visceral response to seeing an animal of any kind missing a chunk of what we expect to see. Or maybe it's that bald is a choice men and even some women can make for fashion reasons. I don't think anyone ever cut off their boob to make a fashion statement (if someone did, please don't tell me!). I find it interesting that I am self-conscious about it. But not self-conscious enough to put in a falsie for working out, at least not now. I might later, and I do feel much more comfortable in public with both boobs in place. There is definitely something to be said for not making a statement everywhere you go. But I guess I wish it's didn't bother me at all. But who wants to look funny if you don't have to? Another issue with the falsie is that it hurts. They tell me I may heal the nerve damage that left my left arm and chest with spots that are sore to the touch, making bras, shirts or clothing of any kind irritating, but that it will take months. Fun! Anyway, I feel great and am looking forward to singing again tonight. Today is a very good day for me to be alive in. Hope yours is good, too! Colleen

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!

Pathology results are in....

I met today with my surgeon. She had the pathology results from my mastectomy and went over them with me. Here is what I understood: there was a tumor of 2.4 cm that had tendrils going into the skin, the nipple and the blood vessels to the lymph nodes, all of which we either knew or suspected. One of the many lymph nodes they removed under my arm had tumor cells in it. The margins looked good, which means there was no cancer spreading into the edges of the tissue they removed. The surgeon was not alarmed by any of this. I will go over it again with the oncologist in 2 days, but here is what I gather at this point. Mastectomy was the right call (I am not surprised). Radiation is clearly called for. Since they did not remove any of the lymph nodes above my collarbone that were cancerous (at least before the chemo) and one lymph node still showed active cancer, blasting the entire area with radiation might kill any cancer still in those local lymph nodes. Of course, since the lymph system is all connected, we can only hope that the chemo or my immune system killed any cancer cells that escaped beyond the local area, or that none had escaped. My good pet scan results seem to indicate reason for optimism. So listen, it's a bummer that they still found active cancer cells. It would have been awesome to find nothing left. But there is no reason not to be optimistic. There is no doubt that I responded extremely well to the chemo. I am clearly healing well (she was delighted with how my incision and area around it look.). Besides, there's nothing to be gained from worrying, except when it motivates me to take really good care of myself. So here's what that looks like: I have stopped consuming dairy products, because I find the epidemiological evidence that groups who consume no milk (the Chinese) have almost no breast cancer to be compelling. I am continuing to take large doses of vitamin C and niacin. I am also getting lots of sunlight and uv lamp exposure when it's rainy in order to produce lots of Vitamin D. I am eating a diet of primarily vegetables, fruits, complex carbs and some animal protein. No added sugar and not too much fruit. Steve and I are still reading to come up with an optimal diet that is also enjoyable. Lots of theories out there with often conflicting advice. What everyone agrees on is veggies are good for you! I'm still regaining strength and getting my lungs back on line, but exercise is going to be hugely important. Steve is excited to help me get into great shape without trashing my crapola joints. So onward we go. I may have more info after meeting with the oncologist on Wednesday, which I'll share then. Looks like radiation will start in 2-4 weeks from now, and Steve will be traveling, so I may go spend some time with my folks in Connecticut. The only problem is they don't have a sun porch! Hoping to visit with some old friends if I'm up there. You can all admire my salt-and-pepper crewcut!

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

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!

On loss and gain

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

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

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

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

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

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

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

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

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

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

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

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

Colleen