Home Again

Got my PET scan Tuesday. Not to complain, but the drink I had to take for breakfast and lunch was truly, wretchedly disgusting. By the time of the scan (2 PM) I was hallucinating food. As always, blood was drawn when I first got there. We met with Jason, our NP, at 1:00 and he said the numbers looked good except for sodium, which was a little low again but not enough to worry about yet. But I have to start drinking less water again. He also said that he didn't expect all the cancer to be gone at this point, but that it should be shrunk significantly. He will email me the results sometime soon, hopefully by tomorrow.

The scan took a half hour, and was preceded by an injection of radioactive sugar followed by a wait of an hour for the sugar to be absorbed throughout my body. The radioactivity is absorbed much more thoroughly by the cancer cells than by regular healthy cells, so when the scan is done the cancer cells "light up" for the radiologist. It's really a very painless procedure but I would recommend anyone getting a PET scan to try to get it scheduled as early in the day as possible because you're not going to eat anything between supper the night before and the end of the scan.

It's nice to be home again. We went to lunch with Nancy's brother and three sisters (and one great-niece) yesterday. It was great fun. Even though they have all been emailing and calling a lot, we don't get to see them often enough. Nancy's brother Bob had his hair cut short in sympathy with me (he was going to get his head shaved bald but couldn't quite do it, but then I'm not quite bald yet either). Her sisters all brought gifts, from vitamins and holy water (from Lourdes) for me to birthday presents for our granddaughter Maddy. It was a beautiful, sunny and warm day. So, true to this winter, we have a major snowstorm coming this evening into tomorrow. The forecast is for 6 - 12 inches. Can't wait for spring.

I just finished installing Linux on my laptop. When I ordered the machine several years ago I made the mistake of choosing Windows Vista rather than XP. Big mistake! I finally decided I had suffered long enough with the beast and downloaded Ubuntu Linux, a free Unix-based operating system. I now have a brand-new old computer. It is fast, stable (Vista would have locked up at least once in the time it took to type the last paragraph) and looks and feels like my Mac. I'm very excited...

Medicare

We got a thick packet from Medicare today, all the charges I've accrued since the beginning of this thing. It's a very enlightening look into our health care system. Some of the charges seem reasonable while others seem excessive to say the least. And Medicare approves anywhere from ten percent or less to one-half or more or the provider's charges. For example, Amount Charged $3623.00, Medicare Approved $556.55. Or, Amount Charged $1361.00, Medicare Approved $262.23. I'm not sure of the rhyme or reason behind it all, why there's such a disconnect between what the providers charge and Medicare approves (and why some of the charges are so high in the first place), but I'm just glad I don't have to pay for it. What does a person without any health insurance do? Not get sick? I guess that would work, but it seems a little chancy to me.

Tomorrow we head up to Boston again, this time for a PET scan. It's a mid-course check to see what's left of the cancer (hopefully none). Either way, I have to finish the last two chemo cycles. I had my "last meal" tonight, steak (grilled, no sauce or rub of any kind) and eggs (scrambled, no milk, cooked in butter). Nothing else, no toast, ketchup, salsa, veggies, salad, fruit, nothing. But tomorrow is worse. Breakfast will be a bottle of PrepScan (I haven't tasted it yet but I'm sure it will be disgusting). Lunch will be the same. And that's all the food (if you can call it that) until after the scan is done. The PET scan will be at 2 PM, after which we're going to head home to Lenox for a few days.

After a couple of days of feeling not so great, low energy, low appetite, some nausea, I'm feeling fine again, lots of energy, and eating everything in sight. And I still haven't lost any more hair. I'm pretty sure now that I've lost all I'm going to lose. But I still look like a cartoon zombie figure when I wake up in the morning.

We had another busy weekend. Jen, our youngest, took the train up from Brooklyn Friday and stayed through Sunday. The kids spent the day with us Saturday so they and their auntie had a lot of quality time together. That night Chef Nancy cooked up a dinner feast for everyone. Sunday we visited at their house and everyone came back to the condo for a leftovers lunch. We hated to see Jen go, as did the kids, but we'll see her, and the rest of the family, in New Jersey for Easter. I can't wait.

Day 6

Like clockwork, day 6 struck again. Yesterday I started feeling lousy, pretty much right on schedule. No fever but slightly nauseous and very low energy. Food has lost its appeal and I'm mostly eating now just to get something inside. It's really not too bad though, no fever so far. But today I rarely left my recliner, just didn't have the energy. Slept a lot and even skipped my walk. But if things go as they have before, and there's no fever, I should bounce back in a few days.

Tomorrow our youngest, Jen, is coming up from Brooklyn to spend the weekend with us and the grandkids (and their mom and dad too). We can't wait. The little guys are as excited as we are. They miss all their aunties. Jen is lucky to have a weekend off. The school where she's studying for her masters in acupuncture has classes most weekends and some weeknights. She works full time so it's a brutal schedule. But a she'll be done in a little over a year.

We woke up to snow this morning! Serious snow. But being the Cape, it had mostly melted by this afternoon and the sun even made a few brief appearances. But now it's snowing again. Someone obviously didn't get the word that it's Spring now.

A Great Weekend

Friday's chemo went quicker this time, about 3 1/2 hours in the chair. I guess they finally figured out that I can tolerate the first drug, Rituximab (it is the R in R-CHOP), the one that takes the longest to infuse. It is a "new breed" drug that targets my specific cancer cells and not other cells, but can have pretty bad side effects in some people. So far I've been lucky and haven't had a problem with it. So we got out of Boston early and beat the rush hour back to the Cape.

That night Chef Nancy made a delicious steak dinner and then she went to a ceremony at the high school dedicating the local Veterans for Peace chapter to a young soldier from the Cape who returned from the fighting in Iraq with PTSD and eventually ended up committing suicide. I had intended to go but was feeling wiped out and nauseous and so stayed home. But by Saturday morning I felt much better and we commenced an incredibly busy, fun and family-filled weekend. Pete and the grandkids came over Saturday morning (their mom went to the flower show with her mom) and were joined around noon by our nephew Dan and his sister Beth, with her one-year old son, Kyle. The kids had a ball, the three of them going through just about every toy we  have and managing to scatter them throughout the house by the end of the day. Our little guys hadn't seen Dan in a few years but it wasn't long before they were sitting in his lap reading stories. Later we guys went out back to play some frisbee and soccer. Six or seven of the local kids, all about the same age as our Jacob, joined us for soccer. There were constantly changing sides, the best being Pete, Dan and I against the totally undisciplined, wacky mob of seven and eight year old boys. I felt pretty good, probably the prednisone kicking in. It was a really nice day and we're so glad Beth and Dan decided to visit. For Dan, our world traveler, it's back to San Francisco and then this winter to Antarctica (it'll be summer there) for more research.

Sunday was another beautiful day, bright sun all day and temps in the 50's. Still feeling pretty energetic (still on prednisone, day 3 of 5), I took a brisk two mile walk in the morning. In the afternoon we went letterboxing with Pete and the kids. The letterboxes were hidden along a trail in a wooded, hilly preserve in South Yarmouth. It was great fun. The theme of the 10 letterboxes was Eric Carle's book Brown Bear, Brown Bear, What Do You See. The stamps, carved by an artist, were animals, their names and colors given in Spanish. Thanks to preschool, Maddy and Jacob knew the animals and colors in Spanish. The directions were good and we found all the letterboxes. Jacob found most of them and Maddy helped helped her daddy stamp their book at each stop. The hiking was reminiscent of the Berkshires. We felt like we could have been hiking Pleasant Valley in Lenox. It felt good to be climbing some hills for a change. Not many of those here on the Cape. Last night Melissa had us over for dinner - delicious roasted chicken, sweet potatoes and salad. I have to admit I totally crashed last night, but what a wonderful weekend.

Still feeling good this morning. I think this cycle is going to be the best one, hopefully without any fever. We'll see.

Shamrocks and Flowers

We just got back from the Boston Flower Show. It was a beautiful day in Boston, temperature in the low 60's, bright sun and no wind. After an hour or so at the show we headed outside and took a long walk along the harbor, one of our favorite places to walk in the city. After lunch at a restaurant nearby (we tried to get seats at an Irish pub, The Whiskey Priest, which had the Boston police pipe and drum band playing in honor of St. Patrick's day, but there was no way - it was jammed) we went back to the show and saw the rest of the exhibits. The ride up and back was easy, very light traffic. All in all a very nice day. And tomorrow it's back to Boston for chemo number four (of six). It's starting to seem routine now, except that I don't really know how I'll feel afterward. I do know I won't eat a burger and fries for dinner. Learned that lesson last time.

Saturday my nephew the world traveler and adventurer will visit us from Antarctica via Hawaii (I'm so jealous), hopefully with his sister and her family in tow. We're looking forward to it as are our little guys who haven't seen their even littler cousin since Christmas and their big cousin in several years.

Many thanks to all the folks who have contributed so generously to sponsor me in the Relay for Life. There is still plenty of time to donate, either online or by check, if you wish to.

The Emperor

I am a bookstore's worst nightmare. I love to browse, can spend hours in a bookstore, but rarely buy a book. Instead I write down the title of any book that appeals to me and then look for it in the library. With the ease of ordering books through inter-library loan online, I know I can always get the book eventually. It just goes against my grain to buy something that I can borrow for free. Too many  years of living on a teacher's salary, I guess. Gift certificates to bookstores are almost impossible for me to spend. I agonize over every potential purchase, picture myself checking the book out at the library, and ultimately am unable to make the purchase. So I usually end up buying something like a calendar or a reference book, like the Dummies guide to my new camera (appropriately named in my case).  This winter I've had even more browsing time. With the very cold weather Nancy and I were taking our morning walks at the mall nearby. She walks about twice as far as I do now, so we would walk a couple of miles together and then I would go to Barnes and Noble while she finished her walk. It was on one of those mornings that I picked up The Emperor of All Maladies to browse. It's a book about cancer, what the author calls a biography of cancer. And what a book! The author, Siddhartha Mukherjee, is a young cancer physician and researcher at Columbia University. He is also an amazing writer. I found the book in our library and have been reading it for a couple of weeks. It is literature that reads like the best of thrillers. The author traces cancer from it's first recorded mention in ancient Egypt through ancient Greece and Rome and the often terrible treatments in the centuries leading up to the modern era. He describes the development of radiation and chemotherapy treatments in the 19th and 20th centuries, with the attendant suffering of patients and political and professional battles. If you're wondering who Farber, as in Dana-Farber Institute, is or how the Jimmy Fund came about and who Jimmy is, it's all in the book. It's a big book, almost 500 pages, but I'm more than halfway through it. It's very hard to put down.

The King's Speech was every bit as good as everyone said. I highly recommend it. I'm still feeling good and still can't stop eating, have even put on a pound.

A Nice Visit

We got back to the Cape yesterday after almost a week back home in Lenox. It was great to visit with friends and neighbors who have been so supportive and so missed. And we had some wonderful family time with my sisters and brothers-in-law. We got back here just in time to see our grandson's Destination Imagination presentation. Seven second-graders conceived and wrote the skit, something about good and bad bugs (it was very hard to hear them speak; I haven't had a chance to ask him just what it was about yet, but I think he was an evil praying mantis). It was very well done, with great costumes, made by the kids themselves. 

Not much new to report. I feel fine, the fever did not return and we have a busy week ahead. A couple of appointments (taxes, finally, and my local oncologist for follow-up), the Boston flower show, and Friday my fourth chemo. Later today we're going to see The King's Speech, which everybody has told us we absolutely must see. I hope you've noticed my announcement above about the Relay for Life. If you have already contributed, thank you so much. If not, please consider sponsoring me in the Relay with a donation. Thanks.

Back Home

We got home to Lenox Monday afternoon to find the fallen tree and its attendant mess gone, thanks to our neighbors Scott, Mike and Steve. There appears to be no damage to the roof and minor damage to the siding and the stairway. Even the fence mostly survived; I'm only going to have to replace one post and one or two rails. All work for the warm spring weather in June. So it could have been a lot worse.

Its nice to be home. Tuesday was a beautiful day in Lenox, cold (27 degrees) but sunny and no wind at all. Sort of perfect winter weather. Last night my sister in Sheffield had us down for a delicious dinner, and we'll see them again later this week. Today is not as sunny and a little windier but still I think Spring is in the air. We just got back from a short walk in town where we stopped in on some old friends. Tomorrow I hope to stop by school for a quick visit. My sister and brother-in-law are coming up from New Jersey tomorrow to spend a few days with us, and we'll head back to the Cape Saturday morning.

I'm in day 13 of my latest chemo cycle (three down, three to go). Days 10 - 14 have been the problematic ones before, when fever and nausea have hit. So far I have just been feeling more tired than usual, generally starting in the afternoon. But no fever or nausea, so I think this one is going to be better. My hair seems to have stopped shedding of late. Dare I think it has stopped shedding altogether? Heck, why not. I'll go with that.

On, Wisconsin! (or, In Defense of Teachers)

I promise this will be the only somewhat political thing I will write in this blog. If you're a fan of Scott Walker, or you think teachers are lazy bums gorging themselves at the public teat, then don't read this. Or do read this, but try to do so with an open mind. I'm a teacher, but this is not about me. My teaching has been at the high school and college level. Nancy, on the other hand, is an elementary school teacher, with 24 years of teaching before she retired. Elementary teachers are the real heroes of education. Yes her official school day started at 8:40 AM and ended at 3:15 PM, but that was only a fraction of her workday. She typically got to school around 7:30 AM to prepare for the day's lessons - setting up her room for learning activities, contacting parents, collaborating with colleagues, and so on. And she rarely left school before 4:30 or 5 PM. And, of course, she wasn't alone. Take a ride past your local elementary school at 5 or 5:30 PM and notice the cars in the parking lot. Those are teachers' cars, the teachers being in their classrooms evaluating the day's lessons, preparing for the next day's lessons, or in the teachers' room running off handouts for the next day. And what do they do when they get home? Well, Nancy would sit down and work on lesson plans (she had at least six different subjects to prepare each day), grade papers, prepare quizzes and/or tests, design and build special projects, etc. This would go on, typically, from the time she got home until 8 or 9 at night, with time off to cook and eat dinner and maybe do some other chores - while being the mother of school-age children for most of those years. Why all this preparation? Is she just a fanatic? Well, try to imagine having 20 or more 10-year-olds (or 7-year-olds, or pick your favorite elementary age) in your room, with the job of teaching them concepts of mathematics or social studies or reading or science or writing. If you're a parent, think of having your kids and another 15 or 20 of their friends in your house for most of the day and keeping them interested as you try to teach them new ideas and skills. Try that for 180 days a year, with a big test at the end, which will supposedly measure your competence, and whether you should be retained or fired. (This is another topic  altogether. I'll just throw in an analogy here: let's see who's the better race driver, you or me. I'll drive a Ferrari and you get a Ford Pinto - remember those? - and we'll have a race. Winner gets to keep his job, loser gets fired. Kind of like comparing test performance of poor, often underfed and perhaps under-parented inner-city students with students from nice middle or upper-middle class communities, like Lenox, and using that as a basis for evaluating teachers.) Scott Walker isn't interested in solving his budget problems. If he was, he wouldn't have started his reign by giving huge tax breaks to his rich and corporate sponsors. He wants to break the public sector unions, the teacher unions being the most prominent. Even with unions. teachers, and other public sector workers, make less, for comparable qualifications, than private sector workers (remember that public school teachers must have at least a bachelor's degree, and in most states a master's degree). A look around the world will show that the countries with the highest achieving students treat teaching as a respected profession and pay teachers accordingly. So congratulations to all the pro-union protesters in Wisconsin (and Ohio and Indiana) and a pox on arrogant, obfuscating Scott Walker and his ilk in other states.

If you've made it this far, an update. It was back to Boston yesterday for a follow-up, the usual blood-letting and meeting with Jason, our NP. My numbers were all good, even better than last time. I feel pretty good, after having a slight fever Thursday and kind of crashing after getting home yesterday (we walked to the MFA after the hospital - about a mile each way - and spent a couple of hours with the exhibits before heading home).  We're looking forward to getting home to Lenox next week.

A Tree Grows in Lenox

And grows. And grows some more. For 60 or more years. Until it gets really big. Maybe 50 feet or higher. A very large ash tree standing off the side of our driveway. Standing, that is, until two nights ago when a really strong wind blew through the neighborhood and rearranged things a bit. Now the tree lies shattered across our driveway, up our hill and right where our split rail fence used to stand. And a branch or two is on the roof. Thanks to our wonderful neighbors the situation is under control. I was first alerted Tuesday afternoon by Michelle, our neighbor across the street who has been faithfully watching over our house since we came to the Cape. Then young Josh, next door, went up and took a bunch of pictures so I could see the damage and also send them to my insurance company. And another neighbor, Scott, is going to cut up the tree to use for firewood. So things are under control and I feel much less stressed now than before. We are truly blessed to have such great neighbors who are also long-time friends.

From the pictures it looks like the damage isn't too bad. There may be some damaged roof tiles and definitely minor damage to the siding in a couple of spots as well as some damage to the bluestone stairway. We're hoping to get home next week, if my body cooperates, so I can get a look up close at the damage. I'm pretty sure I can do all of the repairs myself when we move back in May. Here are some of Josh's pictures:

As for me, I'm doing pretty well six days out from my third chemo. This is the time when problems of fever and nausea have started before, but so far I feel just a little tired. But we're still walking each day (only two miles for me but Nancy still does her four miles) and I'm still eating pretty well. Tomorrow it's back to Beth Israel for testing again. So if all goes well we'll be back in Lenox next week.