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.

Fresh blood to feel better

Tomorrow I get a blood transfusion. Yippee! I am nervous about the risks but my hemoglobin counts are just too low (8.9) My blood is lousy, need some new and improved blood from a healthy (we hope) person. I Had big trouble falling asleep last night and hope it's because the shot they gave me for hemoglobin is also working to build red blood cells. I also hoped this would mean I'd wake up feeling better. Alas, not to be. I am still quite tired and feel lousy. The nausea is better, which is a huge blessing. I am not in much pain. But there is still that thing called malaise, just feeling unwell. Lousy. Yesterday, they drew my blood and gave me chemo. Quite concerned about how pale I was and my reports of feeling awful, they gave me a shot and ordered the transfusion. The shot effects should be longer and the transfusion works right away, so the combination is best. My Dad and Margaret arrived here on Friday afternoon after driving cross-country. Hey had a wonderful trip, each praising the other for being a great traveling companion. They listened to books on tape, talked and were quiet together. Dad was especially impressed by Margaret's driving skills and her ability to be ready in exactly 20 minutes after he knocked each morning. It was the longest time they had spent alone together, and I know both of them thought it was terrific. Mom must have appreciated some help at the end of a pretty rough weak, as I was mainly bedridden and pretty miserable. She was a great help, taking care of everything and sympathizing with my frustration and despair when things kept getting worse. Over the weekend, I had a low-grade fever, pain and tons of nausea. Boy, is it hard not to get really bummed out. Adding Margaret and Dad to the mix might have made it harder, in some ways, with all of us in the same space. I think what really helped was Mom finally finding her way to the larger pool here and doing some great swimming. It's hard for the caregivers to take care of themselves. Margaret is very smart about that, swimming and working out almost every day. My parents left early Monday morning and my dear friend Kathrin arrived that evening from Germany. She and I met when she was an exchange student in my high school. We were in the chorus together and have kept in touch every since, even with long, long gaps during which we didn't see each other. When we moved to Brussels in 2001, we took many opportunities to renew our friendship, visiting her in Munich and having her with us. Since then, we've managed to get together almost yearly. Still, it was a surprise when she offered to fly here for a week. I'm afraid it's not much of a vacation for her, but she is cheerful and claims to be enjoying the total relaxation here. Joseph arrives this afternoon. I am excited, since I haven't seen him since Christmas. By all reports, he is doing very well, enjoying his internship at Abbott labs and plenty of time at the beach. He spends some nights every week with Devra and Sergey and some home with Steve, who is enjoying their dinners together. The other day, I was at a very low point, when the misery of how I was feeling and the fear that the treatment wasn't working. I knew the stress of despair and anger were not helping me, but could not find a way out of the blackness. And, suddenly, I had a thought. My life is not a book, or a movie, or a play. It's not the end that matters. When you die, how you die, is just one more event. A thing that happens. A thing that does not necessarily have more meaning than anything else. Of course, death is the big event that annihilates everything that would have come after, the killer of potential events. But it does not need to effect those that came before it. So that's my goal, to step out of the shadow that the fear or dying can cast backwards onto my days. Not easy, of course, but it helps to tell myself "it isn't the ending that matters." Its hard to live in the moment when the moments contain pain, nausea and feeling crappy. But there are times when none of the above is too bad, and I can breathe and enjoy being alive. Right now is one of them and I'm grateful. Grateful for Kathrin, Margaret and Butters nearby, for Joseph in the air heading towards us, for all of you reading this. It is good.

Feeling better

I have been out of touch because I've been sick. It's been a rough week, and getting worse until today. I think I picked up a virus in my lungs. For some reason, I've also been very nauseous and dealing with pain. The lymph nodes under my right "good" arm started to hurt like heck a few days ago. This was terrifying, as it meant the cancer has traveled again. It also had me worried because the entire nightmare started when my left lymph nodes went nuts and I was in agony until they were removed. I had one bad night here when I woke up in pain. Mom heard me and came in to sit with me for the very long hour it took for 2 oxycodone to manage it. It was a huge gift to finally fall asleep. When I met with the doctors, they still felt this was probably just more of the body responding to cancer cell die-off with inflammation. They also decided to take me off all ivs except the chemo in a bid to reduce the lung filling up and remove the catheter. So far, this is not working. It may be the virus I picked up (running a low grade fever), but the lung is draining more, not less. But the worst over the past few days has been nausea that makes it hard to eat, which makes me hungry, which makes me nauseous.... Anyway, woke up this morning feeling not much better. Mom helped with the wonderful morning routine of draining the lung, taping the tube back in place with antibiotic ointment, trying to eat something (toast and eggs) and trying to fall asleep again. Then, miracle of miracles, I woke a few hours later feeling better! Ate some fruit salad, eggs salad, and am blogging. Boy, I hope this is the turning point. I still don't know if this treatment is working well enough to keep up with the cancer, which is still growing fast. They will check my blood markers on Monday. I am not optimistic for this time, but still hope that I, like others here, will see results over a longer period. The hard part is going to be managing the nausea, as both the chemo and the oral treatments cause it. You would think it would be easy to say "it's worth it if I live." But that's a lot harder to do than you'd think. I've decided nausea is worse than pain, which can be controlled with narcotics. It's bad to be in la la land, but not unpleasant. Anyway, wish me luck in keeping this under control. A whiny post, but that's what's been going on!

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!

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!

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

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

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!

Some days...you could skip

I am sitting, once again, in a hospital room at Sloan Kettering. I did not expect to be here. Somehow, I missed two key pieces of information about this procedure to get a catheter into my lung. First, I didn't know it required staying overnight. Second, they didn't tell me they were also going to replace my medi-port. Both surprises this morning. The medi-port discussion was very unsettling. Basically, the doctor was appalled at the placement of the port, said he didn't believe it was ever in the right place (instead of the migration story we were told. ). Furthermore, he said it was in a terribly dangerous location, that it could easily have shut down all the veins in my neck area, causing my head to blow up like a balloon. It was clear that he was angry this hadn't been addressed much earlier. In the past two days, I had actually been feeling some pains in my neck veins. Probably unrelated, but I sure wasn't going to say no to this. So, to back up a bit, Mom and I took a bus into the city yesterday evening. She babied me by getting chinese takeout, which we ate on my bed in the hotel room. That was fun, though I should have eaten more. I've done this no-food-or-drink-after-midnight shtick a lot lately. But this time was the worst. I woke up starving at 6 am and feeling really crappy and stayed that way. It took hours to get things underway and I think they wheeled me off to surgery at 10. Nothing for 12 hours, and I really felt miserable. I don't know why, but the drug cocktail for this procedure was not the lovely, blank, can't even remember what happened variety. I was woozy but awake as they stuck me, pushed things into me, etc. Nothing was excruciating, but all of it hurt. I counted at least 4 injections of local an aesthetic, and I heard every word the surgeon said as he told someone what he was doing to me. It seemed to last forever, but was about an hour. When they were done with me, the pain started as my lung began to expand into the space left by the fluid. The last straw was a chest X-ray, sitting up for which caused spasms of pain in my back left lung. As they wheeled me into the recovery room, I was sobbing through the corridors. I just gave up and let myself cry. A group of young workers were goofing off, a young guy singing "13 candles" and I came close to shrieking at them to shut up as I rolled by. Too awful. By the time I got there, they were obviously concerned to get me some pain meds! But I decided against the IV dilaudid. I knew they wouldn't let me eat if I took that, and that seemed intolerable. Bad call, since they didn't manage to get me even juice and crackers until hours later. Once I had eaten, they decided to give me fentanyl by IV for pain. Whoa! I started to feel the med and my pulse and blood pressure dropped. I was dizzy, nauseous, losing it. I'm amazed by how utterly deadpan both the nurse and doc in managed to remain, as they increased my fluids, lowered my head and discussed giving me a stimulant. All the time, the phrase "oops. I think we just killed the patient" was going through my head in a kind of loopy way. My poor mom, watching my lips get white, hearing all of this, knowing, as I did that this was NOT GOOD, rubbed my hands and went along with the pretending this is not a crisis script we were all following. Anyway, the fluid did the trick and I stabilized. And it did stop the pain for a bit! They first thought it was an allergy, but saw I'd had the same drug during surgery and decided finally it was probably dehydration. After all, I'd had nothing my mouth in 14 hours and had fluid drained from my lung. Just when I was starting to think something was wrong, the pain suddenly got more manageable, I felt able to sit up, and mom brought me real food. But the next blow was when the person in charge of the drain showed up and told us they couldn't train me how to use it until tomorrow. Also, that the visiting nurse would have to come to the house for a few days afterwards. And all I could think was that Steve and I planned to leave for Phoenix tomorrow morning. Not going to happen. I do not want to delay starting treatment out there, but may be forced to let it slip by a day. Nothing to be done about that right now. I wish I has listened to Steve when he suggested doing this first might create a big delay. But I am glad to have the port fixed. So Mom was finally able to leave for a much-needed nap. They found me a room at 4 pm and wheeled me up here. The sun is streaming through the window and Dev just walked in. Things are looking 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.

Chemo again...

A brief update. I am in day 4 of chemo and the steroids wear off. Feeling it. I am scheduled to have a catheter inserted into my left lung that will drain for up to a month. This seems wise to take pressure off my system. Other than this, I am putting into motion an alternative treatment option that appears to offer more hope and less suffering. More on that as it emerges, but I am feeling good about it, as are the members of my most immediate team (or they are pretending to, which will do!) I have decided against pursuing a clinical trial of any kind (not that it's been suggested yet.). I don't want to be that much of a guinea pig (we are all part of a big experiment here, anyway.) Anyway, Butters is where he needs to be (my lap), I'm in almost no pain and nausea is at bay. I can write, read, watch movies and move around the house a bit. Not bad. Hard to believe this is helping me heal in any meaningful or lasting way. That's why I'm willing to try something new. Onward! Have a great holiday if I don't write again before then.

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!

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!

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!

Surgery is scheduled...

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

Pre-surgery comeback continues....

Tomorrow I am going to schedule my mastectomy. I'll see if they'll put me on the calendar for the Wednesday after the CT-scan to recheck my lungs. We can get all the pre op work done and only call a halt if they don't think the results are good enough. Since I'm no longer coughing much, and my lungs feel better, I'm confident we'll get the go ahead. I will feel better knowing there is a date in place. For the rest, I feel in limbo. As I wait for my lungs and the rest of me to heal from the chemo, I am in a self-imposed semi-quarantine. I am basically home-bound and restricting visitors. This is hard to do without becoming stir crazy and depressed. I do go out twice a week to a private Pilates session that is helping get me back in shape. And I do coach clients and attend meetings by phone. There is email, texting, Facebook and phone calls, all of which keep me connected. A nd there is Butters, who is never far from my lap (even in the bathroom!) The great news is that I am healing! M hemoglobin count is on the way up, along with other important blood levels. The fog of fatigue is lifting and I am feeling restless and bored. I am walking at least once a day and running (very) short distances to get my heart rate up. This is impressively awful, with me literally gasping for air after a moderate jog of 50 feet or so! But the trend is positive. And my hair is growing back. It is happening in a weird way, coming in faster on the sides and back (male pattern baldness...VERY attractive!) and far more gray than before. I've been coloring my hair for a long time and can't be sure, but it seems there is more white sprouting than my roots would have promised. The other odd thing is the texture, fine like baby hair. I hear it may come in and be gradually replaced by normal hair. Have to say I hope so! I think my eyebrows are coming back, but the evidence for eyelashes is awfully close to wishful thinking at this point. I wish I didn't care. It would be nice to report that vanity had given way to a deeper and more spiritual view of myself. Well, sort of, maybe. I mean, in the end, we still live in the world in which we are attracted or not to each other based on physical attributes. Beautiful people make more money, get the interesting jobs, and on and on. So its hard not to be bummed to find myself emerging from this chemo significantly lower down on the pecking order. I am fatter due to the keep-your-stomach-full-to-avoid nausea plus no energy to move around effect. To also be grayer, possibly lashless, not to mention one-breasted. Well, it's no fun, that's all. Worth it, definitely, but no fun. So what kind of meaning can I create from it? What would I gain along with the freedom to stop caring how I stack up a bit earlier than I had hoped? It used to be that youth was not the only thing worth having, when middle age meant an increase in a different kind of status. Now we want to be sexy until we die, and we pursue that dream through plastic surgery, diet and exercise, makeup and hair dye. Big effort, isn't it? And, in the end, a losing battle. So here's the thought... I embrace strength, fitness and health, do what I can to dress up the exterior without extravagant effort and decide to love the result. Decide to own my middle-agedness with humor and as much grace as I can muster. God, I hate the idea. I resist it, feel ashamed at the loss of status and power it implies. So I have internalized the cultural devaluation of older women, at least those who are neither thin no youthful-looking. Ugh! On the other hand, I'm not naive enough to think I create my own rules, that being comfortable in my own skin means I won't pay a price with others. Fatter and older is not better in our world. Worth thinking about further. Another exception to my isolation are rehearsals for a cabaret performance May 2. To give that up seems too high a price. So I went last week. The lack of breath is a challenge, and I have lost some range and transitions between chest and head are rough. But the voice is still sound and will come back. To be there again singing is balm to my soul and a promise of a future beyond sickness. On a final note, Steve and I just took the dog to the reservoir and walked a good 2 miles! I am tired, but did manage a short sprint at the end before my knee complained too much. Running is not a good form of exercise for me but I am coming back! Surgery and radiation still too come, but I am hopeful the worst of this is behind me.