To Hell and Back...

In order to try to deal with the persistent queasiness, I've tried all manner of things. One of the most recent was Marinol, a pill containing THC, from marijuana. I tried it the morning we went to the acquarium. First impression was that it did not work at all. I was nauseous all morning, and felt otherwise normal. After getting home, I waited a while before deciding to increase the dosage. At this point, I was lying down, and thank goodness. Some time after taking the second pill, I realized I had dozed off. I woke up with an incredible feeling of warmth (side effect), drowsiness and no nausea. This seemed good at first, but soon started to take on a nightmarish aspect. I kept having the feeling that I was dreaming or watching a movie instead of being awake. This disassociation, coupled with a slight paranoia was awful. It took hours to feel normal. I hated it. I imagine it could be useful if I were in terrible pain or vomiting. I hope I never need it! Yesterday, I tried another drug, in suppository form. It was a tough day already. In the morning, the doctor told me that, as I had suspected, my tumor markers had gone up not down. They fear the cancer is resistant and not responding. They will tweak my chemo regimen starting Friday. He told me not to give up hope. But it was hard news to hear. I found myself weepy and afraid all day. I took the medication in the afternoon. It didn't seem to make me less nauseous, at least not right away. But it sedated me. The sedation had a depressive effect, exactly what I didn't need! By later afternoon, I found myself in a state of utter despair. It's hard to describe how awful it was. I could not shake it, try as I might. I was in a Hell of my own making, trapped in my misery, barely able to be civil. I apologized to Margaret for being in a place so dark even her love and kindness could not reach me. I couldn't imagine an end to it, other than suicide, which I would not do, but truly seemed a better option than living in that kind of emotional pain. I was in Hell. I'm not sure how long it lasted, at least a few hours. Then, two things happened. I decided to take an oxycodone for pain, which I knew would also lift my mood. And I realized there was only one way out, which was to come to terms with the worst. I remembered that I was capable of finding peace, even without hope. I started to meditate, breathing and thinking about how my life is connected to a much greater reality. I allowed myself to feel that connectedness to all of life, how unimportant my life and death are in the larger scheme. And, finally, I found myself feeling peace, even joy. This is not the same as giving up. But, by feeling at peace with the possibility of my own death, I can enjoy my life, and face the hardest parts with greater courage. I do not want to die young. But I can face it if I have to. I know that now. And that makes it easier. Somehow, facing the greatest fear makes the smaller things easier as well. I know I'll continue to have bad feelings throughout this. But to know I can pull myself back from Hell itself, is a great comfort. I know this will have been a hard blog for many of you to read. You, of course, don't want to think about my losing this battle. I'm glad for that. But I need all available energy to do what I need to do. Knowing that my death is not the end of the world is something I need to know right now. If I am at peace with either outcome, then I am at peace with the world. Haven't given up, I'm just going to be happy either way if I possibly can.

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!!!!

Hard days and tiny needles...

It's been a hard few days but things are looking up. After a wonderful Thursday through Saturday, I felt lousy on Sunday. Even though we had a wonderful visit with the Tucson family, I had to take a nap. That evening, my lung drained 175 cc after having dipped to 25 the day before. And my platelet count dropped to 1! Plus, I am really fighting nausea. Bad to go backwards. I felt tired all day Monday and Tuesday. Despite my best intentions to stay positive, I found it hard to resist the thoughts that this was all a big exercise in wishful thinking. Of course, it might be. But it's no good to think that way. Today, I feel better, although I still drained 150 cc this evening. I had a meeting with my medical team tgus morning and they made me feel better. Wanda, the doctor in charge of the insulin chemo is convinced I will be just fine. She is unconcerned about the platelets, sure they will go back up with the help of the nupagen shots they are giving me. She sees how robust I still am and feels sure I will do well. There are a number of possible explanations for why I feel lousy. 1. I am being overtaken by the cancer and the treatment isn't working. 2. The vitamin c is making me feel lousy (this is common) 3. What I am feeling is mainly cancer die-off that makes the body feel lousy or 4. Combo of 2 and 3. They seem to think that's the most likely. The other reason for optimism is that the cancer may have stopped advancing, though it's not yet retreating visibly. I am having some pain in the affected area on my chest, which Wanda thinks is is a sign that the chemo is attacking it. I am worried that my lung continues to drain, but they say its too early to be worried. So, what we are doing to do is back off a bit on vitamin c, add an additional treatment with ozone and UVB designed to make me feel better, and go for acupuncture for the nausea and fatigue. I managed to make an appointment today for acupuncture, which I've never had. The doctor was extremely kind. I started the treatment lying down on a massage table in a gown. I always was mystified and intrigued by the idea that you could insert needles, no matter how small, without it hurting. Guess what, you can't! It doesn't hurt much, but it doesn't feel great. Each needle goes in with a tiny prick. In each area, I could feel a reaction, a slight tingling. But my right shin started to really hurt, all of it! I told the doctor, and he removed the needle, saying that, for people with a lot of nausea, this area could be very sensitive. Then he turned on a tape and left me with a nice-smelling eye pad on to meditate and listen. The woman on the tape encouraged me to focus the tones (music played on what sounded like a small gong, cymbals and harp) on various parts of my body. I don't really know what that means but I did find that, by concentrating, I could imagine the music vibrating in the skin of my abdomen, chest, face, etc. Kind of cool. After about 20 minutes, he came back in, removed some of the needles (which also hurts a tiny bit), and did some acupressure on my feet. After more listening to music, he came in and took out the rest of the needles and worked on some pressure points on my head and arms. This felt fine, but worried me a bit when it came to my left arm, where my lymph specialist tells me hard pressure is not good. Then he had me sit up and massaged my shoulders and back. He then applied glass vacuum cups to my back, which are supposed to adjust my chi, and which pinch. I am most skeptical about this process, but have decided it won't harm me and is part of the package. We'll give this process a few weeks and, if it helps, I'll continue. If not, it's another cool experience to add to the adventure. So I feel a bit better and hope we are on a slightly adjusted and better track. I said goodbye to Margaret, who is flying home for week and driving back with my Dad so she has a car to use (too young to drive a rental.) She and I had a wonderful time with my brother Colin, who's still here for a few days. I'm excited that some of my oldest friends, Kristen, Susan, Bridget and Jacqueline arrive tomorrow or the weekend. I hope I'm up to some fun stuff with them but we can all just hang out and talk if that's all I'm up for. Hooray!

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!

Enjoying the sunshine and getting better....

i left my electronic plastic room key in the direct sun for 15 minutes and it warped too much to be usable. it is hot out here! we are having a nice time. treatment seems to make me queasy and tired, but nothing like "real" chemo. We have settled into a routine. steve goes for a walk with Butters in a local park with Abraham, the walking buddy from Syria he talks to about world events. On non-fasting days, I eat and then we head to treatment for 7 a.m. On chemo days, like this morning, I fast and arrive hungry. After a bout 20 minutes of saline and magnesium drip, they inject the insulin through port. Lucinda wanted to know the dosage. It is 24,000 of humalog, for whatever that means. Hope i got that number right. After 15 minutes or so, she tests my blood sugar. Once it hits 50, she quickly injects the chemo and I drink juice and start to eat. Its not a good feeling to let your blood sugar get that low, I have to say. My hands were shaking as I started eating, but it lasts just a while. After this, I moved to the injection room to sit with everyone else and get my ionic foot bath and foot massage (yum!) while getting my multi vitamin treatment through the port. today I also did the hypergravity machine. this is a very weird experience of being vibrated very quickly as you stand on the machine. By keeping your knees slightly bent and leaning forward onto the balls of your feet, the vibration doesn't go to your head, which feels better. SImply standing on the machine is strenuous, its hard to explain why. Anyway, it is supposed to increase lymphatic drainage, which makes some sense, since that circulatory system is activated mainly through muscle movement. Based on Steve's research, we have decided to do IV vitamin C 3 x week instead of once. It seems, if nothing else, to make me feel better (although it can also make me nauseous.) I had a coaching call with a client and have gotten Mary BEth onto the task of setting up regular appointments with everyone I coach. Coaching a few clients a day in the afternoons is very do-able. It is good for me to keep the connection, and I hope good for my clients! ANyway, we are off to Wal-Mart for vitamins and supplies, as well as to fill a prescription for an antibiotic that will hopefully discourage the cancer going into my bones. Good idea! We have been having a wonderful time with Steve's cousin Lisa and Aunt Lucinda. What a great couple of women they are, and watching them bask in the desert sun and brun away their Seattle dampness is fun. They both love it here! We met two of Lisa's dear friends for drinks after a lovely dinner in Scottsdale last evening. Tonight, they'll come here to meet Butters and we'll have dinner nearby. We'll be sad to see them go, and hope to persuade them to come back again!

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!

Moving to the desert...

Two weeks ago, I got the bad news. Not to put too fine a point on it, but the treatment has failed. The cancer, possibly in reaction to surgery, has exploded back into the skin, my lymph system and my lung. The news actually came on slowly enough, and I am aware enough of the implications of various things, to not have been shocked. I could see that the scar was not healing, seemed to be getting worse. I could feel the effect in my lung. bBut there's nothing like that old 2x4 between the eyes.... So what do you do? It's interesting how the mind takes in bad news, in a step-wise fashion, forward and back, acceptance and denial and distraction as it creeps up on you that things have changed. And I did despair. I found myself overwhelmed by grief and anger and terrible fear. It's been a very hard few weeks. But I have decided not to throw in the towel quite yet. A friend recommended an alternative treatment center in Arizona and I looked into it. I have to be honest and say that an extensive due diligence is more than I can take right now. I like their general approach, which is to attack the tumor through low-dose chemo potentiated by insulin. It's an FDA-approved, though still controversial (what isn't?) approach to try to target the cancer with chemo. It allows you to have less chemo, so the rest of the body says stronger. More importantly, they treat the immune system through IV vitamin c, detoxification, other vitamins, etc. They hope to help your own immune system fight the cancer, rather than just directly attacking it with surgery, radiation and drugs. The odds against me are long either way. With the traditional approach, I'm guaranteed a lot of discomfort and no cure. My hope is that this will offer a higher quality of life and perhaps even allow me to get into and maintain a true remission. So I am in the process of doing paperwork, making phone calls, packing and moving my life to the desert for at least a month or two. I plan to continue coaching and staying in touch with everyone. But, if you happen to be out west and want to come visit, I would love that!!! I'll post when I have dates.

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!

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

Feeling happy while feeling crappy

Here's one way to feel happy while feeling crappy. As I build this skill set, I'll share what works with all of you. Let me know if you try anything I suggest that helps you over the hurdles in your own life. And please share other things that help. I can use all the help I can get!

This morning, I am dealing with the following physical crap. 1 a headache that is likely the beginning of the bone pain that kicked in same time two weekends ago. 2. Nausea and 3. Fatigue (we're still here in chemo land, Dorothy!).

Here's what helps: I sit quietly and focus my attention, not on the discomfort itself ( doing that makes it worse), but on the emotions and thoughts it brings up. Here are some of them...

This is terrible. I hate this. I need to do something. I shouldn't be feeling like this. I should be handling this better. If I were more skilled, this wouldn't bother me so much. This is bad. Something must really be wrong to feel this bad. This pisses me off. I am sick and tired of this....the list goes on, and on, and on....

And here's what I do with all that. I accept it. I allow my resistance to all of it to fall, and I just allow the rush of thoughts, feelings and beliefs to flood into my consciousness without resistance. I experiment with just allowing all that stuff to simply exist inside my head. And here's the really important step. When I start to resist it, to push it away, to add new layers of thoughts like "this is just awful" or " this is too much", I allow those, too. For a moment in time, I simply try the experiment of letting absolutely every ridiculous, crazy, stupid thing that pops into my head to have permission to be there.

And here's what happens. It's all okay. The emotions well and they ebb. The thoughts pass through and move on. And I am left with a feeling of deep, inner peace that comes from simply acknowledging that all that stuff, because some part of my brain has deemed it okay, has lost its power to harm. If a feeling is just a feeling, then what is the harm? If I am not afraid to feel afraid, where is the harm? If I can forgive myself for judging myself, then who is hurt by the judgement?

At the core of this practice, which I learned from the Sedona method, is a recognition that, if we can make a choice to allow, rather than resist, our emotions, we can handle them. There appears to be a part of our brain, some kind of executive function, that exists separately from the emotion. We access it, not by resisting the emotion, trying to change it or make it go away, but by letting it be.

It makes sense that our emotions are signals that something from our environment is impacting us and needs addressing. Once we address it, the signal has done its job and the body can turn on the off switch. The question is, can we access the off switch consciously, when we know the situation can't be changed, and the emotion itself has become a problem? I think we can. But the irony is that the off switch looks more like an "on." Buddhists say "What we resist, persists." Spiritual take on this aside, I have observed it to be true in the test tube I live inside. Try it and see if it's also true for you.
This skill of focusing my conscious mind on allowing, rather than resisting emotional and cognitive reactions seems to change their course. Over and over again, I find this practice simply works in an almost magical way. I would love to see an EEG or brain scan looks like when I do this. I do know how it feels, and it feels great.

Some people give this experience a spiritual name, they call this inner calm soul, or grace, or an awareness of God. For me, that is less important than the fact of my own ability to feel it. The calm at the center of my storm is something I experience directly. And I know it is good.

Here I sit, nauseous and tired and perfectly content. Letting the emotions around it, and the thoughts that drift in and out of my mind about it, pass through on their merry way. And I, some part of me that exists here beyond all that, is at rest and at peace, filled with joy at being here on this gorgeous Fall day. Crappy and happy and very much alive.

Peace, Colleen

And the real battle begins....

It has been a hard week. After my second chemo treatment last week, I felt good for a few days, he usual. On Sunday, the steroids wore off and the worst of it kicked in, as usual. This time, I was prepared and things went well for awhile. My Dad came down to visit because Steve was to be away. I helped make a delicious dinner on Sunday. Monday, we went to Lowes and grocery shopping and I read and rested.

Things started getting hard on Tuesday when, instead of feeling better, I felt slightly worse. What is hardest at this point is the nausea. Although the anti-emetics control a lot of it and I am not vomiting my immortal soul, as Twain would have it, I found myself with a slightly burning stomach and nausea all day. Since I was waiting for workers to come measure our kitchen, I didn't take the anti-nausea med that makes me sleepy. Instead, I tried what had worked in the past, which was to keep my stomach full. Nothing worked, despite eating anything I could think of all day. By nightfall, I was exhausted, grouchy, worn out by the long, slow grind of feeling bad.

All my life, I have been a creature of feeling. Very much in-touch with my physical and emotional state, I have used them as a barometer of how well life was going. Although I have chosen courses of action and followed them, I've never been good at ignoring the signals that told me something was "too hard", "too scary"' etc. This has meant that I've never been a particularly disciplined person.

On the other hand, I has given me strengths others don't always have. I've never been good at hurting other people in order to get my way, for example. Since other people's pain feels bad to me, I try to avoid it. I've never tended to excess in many areas, since my internal discomfort would weigh in to protect me and bring me back to center. I've tended to avoid really damaged people, since their obvious pain and anger triggers my emotions and I self-protectively avoid being vulnerable to them. In short, it has made me sensitive and sensible and kept me fairly healthy.

Now all that is stripped away and I have to find a new way to be. I feel lousy all the time. I feel nauseated, fatigued and vaguely unwell all the time. What I learned this week is that, if I do what I've always done when that is true, I will be miserable and depressed. It Is a hard adjustment to make.

In the past, I've been a baby about being sick. Because I am so used to feeling really good, my reaction when feeling a bit les than that has been to stop, curl up around myself, take medicine if I need it and wait it out. This has worked well. I am rarely sick more than a day or two, I heal and get back in the saddle.

Three days of nausea and fatigue and trying to cope by reading and resting has been really tough. The signs of incipient depression loomed; nothing seemed worth the effort, nothing seemed appealing. Tuesday night, I roused myself to take a walk. It was gorgeous out, cool and quiet on the streets of our little village. Yet the nausea wouldn't leave me and, halfway through I stopped, feeling unable to take another step. Then, from somewhere inside me, an orneriness rose up and joined the fray. Standing there under the street lamp with Steve, I said out loud "I will NOT mind. I will NOT mind this. I will NOT mind being nauseous!" and I kept walking. And I did not mind. I was nauseous, but I could ignore it, and I got through the walk, fiercely refusing to let the nausea get under my skin.

So I am embarked on a new journey of not minding, and it's a totally new adventure. In many ways, the drama of diagnosis, the excitement of massive change, the incredible challenge of facing such momentous news and incorporating it into my life suited me better. My natural dramatic flair kicked in an allowed me to transform the nightmare into adventure. Crisis has always brought out the best in me. But this long slow, boring siege of feeling like crap all the time, is actually the deeper challenge. Not surprising.

So, now I see the enemy. In fact, I have fallen before it, lain for a few days prostrate and miserable. Last night, I realized that this less exciting, far more threatening monster of despair and depression, the death of a thousand cuts, is the real battle. How to be constantly nauseous and remain cheerful, hopeful, powerful? This will clearly take a metal toughness and discipline nothing else in my life has required. Here is where I will find out what I am made of.

So the game plan is this...rigid discipline with affirmations, gratitude journal, blogging, meditation, and all the things that keep me whole. Discipline of mind to turn my attention away from negative thoughts. Scheduling time to interact with people ( avoiding group events that brought me a virus last week I did not need added to the mix), to sing, to exercise, to laugh every day.

Finally, I can get my curious mind interested in this process. What is it like to become a person not defined by how I feel? I need to be connected to a sense of purpose that goes beyond chow I feel right now. I need to keep my reasons for surviving this in front of me at all times. I need to tap into something greater than how I feel right now to keep me going. All the time, not some of the time. How strange it will be. I am looking forward to finding out.

Fear of the BOOK

Looks like I struck a nerve by threatening to write my “21 Stupid Things To Say to People in Trouble” book in my first post.  Of course, this book is likely to be a best-seller, so I am going to have to write it.  A friend who has two kids with special needs is collaborating with me…her contributions really add spice.  You'd be amazed....We fantasized about leaving the book lying about in conspicuous places when certain people come by, dropping it on people’s porches, etc.  In fact, we nearly peed ourselves swapping hurtful stories, transmuting them into something that feeds our feistiness and feelings of superiority. Hey, you wanna criticize me?  I've got CANCER, remember? (God, being able to play that high horse card is doing me SOME GOOD these days!) 

But, really, really, really, you need to know that the only really bad thing you can say is NOTHING.  The cruelest and stupidest response we have when someone is hurting or sick is to run away, using “I didn’t know what to say…” as an excuse for cutting and running. When it comes to sheer hurt, abandonment leaves implying that the disease might be your fault (see The Secret), or that things are worse than they seem (or better than you seem to think they are) in the dust. 

So, please, screw up, faux-pas and stumble away - just promise to stick with me.  The number and strength of a patient’s relationships correlates with better treatment outcomes.  By just being here, you may actually be saving my life.  Here, at the the center of an incredible web of support, love and good-wishes that extends, literally, around the globe, I am strong. 

And, if you end up in my book anyway, just know I’ll definitely change your name!

Yours,  Colleen