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