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.

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!!!!

What if you were running out of time...

So I have to confess something. I was hoping cancer would change me more than it has. Maybe the specter of death or even just being sick would help me answer some fundamental questions like "What is the meaning of life?" or, more practically, "What am I doing with my life?" I had this fantasy of waking up each morning with a joy-filled sense of purpose. I thought maybe I wouldn't feel so confused by life, that things would seem simpler, clearer. I also hoped I'd find myself braver. Somehow, having cancer would help me find the "off button" for anxiety and self-doubt. Guess what? Didn't happen. I'm still me, stuck with the same dilemmas, conflicting emotions, habits of mind I had before. Plus, the sheer annoyance of the cancer and treatment process make life seem harder, not easier. Not that I haven't learned a lot, become more patient, a bit tougher, etc. But no magic transformations. Damn! So, if that's the case, I guess I just have to work harder at it. Last night, while looking at a website about breast cancer, I was reminded about just how grim a cancer I have. Pre-menopause onset, triple negative, stage 4 within months. So, while it's not useful or smart to think negatively, it did make me ask myself a useful question. If I DID know I had limited time left (more than enough to just say my goodbyes and visit Disney World) but enough time to accomplish something, what would it be? I don't really have a bucket list because there are just too many things I could do and no meaningful way to choose. In the end, I don't see my life as a collection of experiences, a kind of checklist to get through. Plus, I've already done a lot: lived abroad, learned another language, been on safari, sung to large crowds, reared two great kids. Would I gladly do more? Sure! But, in answering the "If I had one good year left..." I don't jump to a list of travel locations or exotic experiences. What I want is to do is some good work. I'd like to leave more of a mark than I have so far. I'd like the world, the course of history, to be shifted slightly because I was here. As alluded to in paragraph one, I'm still stuck with a lot of the fears and limitations I always had. Rats! But, if time were running out fast (which it is for all of us), what then? So, let's start with admitting here what I really want. What I'd really like to do is help prove that the "hard-ass" view of the world is wrong and that we can get much more done through openness, tolerance, respect and humor than harshness and competition. I believe people are capable of much more than we've allowed of in the past, and that we are on the brink of great change for the better. Hey, I admit there's a lot about human beings not to love. I'm a history major, and you only have to take a cursory glance through the 20th century (not to mention all the other centuries) to find some pretty disheartening stuff. We are capable of doing really bad, and really stupid things. We do it all the time. You could pretty easily give up on the idea that life can be significantly better than it is, given our demonstrated capacity to mess up, lie to ourselves, and treat each other badly. But I think this is an exciting time to be alive. We are just beginning, through science, to gain a real understanding of our own nature and our brains. And we finally have the technology to gather huge amounts of data and test our theories about ourselves. For the first time in human history, we have a potential way to get past our own blindness when we look in the mirror. I've got to be honest. I wouldn't be all that excited about this if all we were learning is more about how rotten we are. Up until fairly recently, a lot of what we thought we knew was pretty freaking depressing. From evolutionary theory, to Adam Smith and B.F. Skinner, the reigning portrait of humankind was that we could be counted on to be selfish, driven primarily by sex and survival, and manipulated best through punishments and rewards. I find this depressing. More than that, it doesn't feel like an accurate picture of the inside of my own head, nor the way people I knew seemed to behave, at least not all the time. It always seemed to me that people are capable of acting from a different place, given the right conditions. Newer research that peers deeply into what motivates us and how we behave offers a complex, nuanced, and I think more hopeful view of how we operate. Altruism, cooperation, curiosity can also drive us. To be fair, we are also learning more about how profoundly irrational and (frankly) nuts we can be. But even this is helpful. Better to know you have blind spots than to crash about convinced you see the light! So, what I'd like to do is contribute to building a world in which more of us get the chance to tap into the less brutal parts of our nature, our curiosity, our creativity, our altruism, courage, humor, compassion, and joy. I believe we can create organizations and systems that bring out the best in us. I, frankly, am tired of living in a world run by people who assume the worst about people. I've always gotten the best results in my own life by assuming the best of people and then acting in a way that makes it easier for them to live up to that expectation. I believe organizations should do the same. If we don't like the behavior we see, we should assume the conditions are making it hard for people to do better, and try something new. And try again. Until we get it right, which includes people feeling truly engaged, useful and appreciated. So, if I am using this cancer experience to find the focus and courage to do what I most care about, what then? Coaching business owners is one way to do this, but it is a slow process one business at a time, and quite dependent on the owner sharing the vision and being willing to do what it takes to implement it. What I'd like to do more is public speaking on this topic. Being in front of an audience, engaging them, answering their questions and taking them through exercises that change their thinking is my favorite way of working. If I had very little time left, that's what I'd do much of the time. So maybe it's time to figure out a way to do just that?