I am slightly late in getting this posted, but I am getting a little closer to my ideal posting schedule. Last week was a good one with some beautiful indications that autumn is upon us – my favorite season. There was even a night when we had to put an extra blanket on the bed. As the week went by, here are a few of the good things that caught my attention!
Royals Success – I would not be a good Kansas Citian if I did not put this in my Number 1 slot! The giddiness in this town is palpable. Everyone, everywhere is wearing their Royals gear that reflects team members from George Brett to Eric Hosmer. (Spoiler – last week, the Royals won their wildcard game – this week, they won their series against the Angels to put them into the American League championship series.) This is fun for my dear city!
Michael and Molly – Watching the Royals win with our friends, Michael and Molly was quite a treat – even though they were Oakland fans. Dan, J, M and I met Michael and Molly in the most memorable of ways. We met them during a morning tour of the Templeton Rye Distillery in Nebraska. They came from Des Moines; we came from Kansas City. After the tour, we connected over an opportunity to get to know the product a little better. Among the six of us there, we found friendship that has now led to visits to each other’s homes. This week, they made their way to KC! How very good that was!
Baby Girl – When I was pregnant with both Sam and Ali, I think I had one sonogram between them. I don’y remember that it told us much more than that I had something going on in there. Many changes have occurred since those days. Sonograms happen more regularly, and the machines and technicians are pretty advanced. With this has come a new phenomena – a gender reveal. Last week, we got to join in a celebration in learning that our dearest J&M will be bringing a little girl into the world next spring. We all found out when we sprayed an unmarked can of silly string – and it was pink. We can’t wait to meet her.
New Jobs – Sam was excited to start a new job last week as the Beverage Manager at Ma Peche in NY. He sounds so excited about what he will learn and the great mentors available for him. Both he and Jean are in new positions as this year winds down. It has been a big year for both of them, and I am eager to see their continued career growth and personal growth. The other new job is Dan’s! He found out that he will be working at SAFEHOME in Johnson County, Kansas helping to bring dollars to a shelter for abused women. This opportunity presented itself and just seems like a wonderful fit for everyone.
A Successful Audit – Every three years at my work, some of our research is audited. That means that people come to our site, and look through all of our records to make sure that things happened the way that they were meant to happen. Preparing for an audit means many hours of combing through a medical record and pulling out the evidence. Paper flags are used in abundance! This is audit year, and our auditors were on site last Monday and Tuesday. When one hears the word audit, it does not sound pleasant. Our two days, could barely have been more pleasant. Our auditors were good listeners and teachers. Our preparations was exemplary and I think that, to a person, our group was proud of what we did and how we did it. I know I was so proud of everyone.
What a nice week that was.
This week brings us Thanksgiving. For a few different reasons, this past week was a challenging one to identify my good things. I am glad for Thanksgiving because I think that gives a good opportunity to regroup in thinking about how important it is to be attentive to the good things that are in our lives everyday. I wish all of my readers a happy Thanksgiving, and I hope that each of us finds many good things each day!
Breakfast – Dan was sick this week, which meant that my breakfast service was put on hold. That could have been a disaster, but fortunately for me, we had the delicious Farm to Market/ Roasterie coffee limited run Black Russian Bread and over the top, Shatto butter. Each morning, I put a slice of this dark, rich bread in the toaster, and when it came out, spread it with the creamy tasty butter. The bread itself has coffee overtones combined with the typical richness of a dark bread. It is speckled with juicy raisins, that I am typically not a big fan of, but it works here. The butter is a product of Shatto dairy that has transformed how we think of dairy products in Kansas City. I remember the getting a bottle of cream from Shatto for a dessert that I was making. I can’t recall what the dessert was, but I sure do remember the cream. It was/is heavenly! Our loaf of bread is now gone and it is not expected to reappear again anytime soom. Lucky for me, Dan is better and he should be back on breakfast duty this week.
Reading Great non-fiction science – I finished The Philadelphia Chromosome this week. This is a book about the discovery of the genetic malfunction that is unique to people diagnosed with a certain kind of leukemia. Because of this discovery and the research that occurred because of it, a medication was developed that could curtail the chain reaction that created the out of control cancer. Jessica Wapner does an incredible job of explaining a very complicated story. I think for the first time, I understand what a kinase is and what kinase inhibitors do. As I was finishing up this book, I also picked up the latest Esquire and read an article in the latest issue of Esquire. Patient Zero tells the story of Stephanie Lee. Stephanie Lee was profiled in an earlier Esquire issue because of her Hurricane Katrina experience. This story deals with her being diagnosed with late stage liver cancer and being enrolled in a clinical trial in Memorial Sloan Kettering that may build a treatment specifically for her disease. This is amazing stuff, and when it is reported well, it does the reader such a great service.
Haircut, etc. – My hair is problematic. It is fine, kind of thin, and curly. It doesn’t grow fast, so my thought that I will just grow it long and make that my style doesn’t really work. Every six months or so, I go in to get my hair cut. I usually just go to a chain operation. Usually, I can’t see any reason to spend more money on this than the $15 that the shops offer. Saturday was my six month appointment. I told the woman that I wanted a shampoo and a haircut. The shampoo was the best. She spent 15 minutes washing my hair twice, putting in conditioner, and massaging my scalp!!! Oh dear god!
Helping Dan Make Pretzels – For as long as I have known him, one of the things that Dan has enjoyed most in life has been hard pretzels. There was a brand that we ate in college that is the benchmark of all pretzels. No one has met the Gibble standard in all these years. Recently, however, I bought him a cookbook all about making pretzels. It has inspired him. Last week, he made a very nice version. Yesterday, I got to help him make his second attempt. This was the real deal. We had a boiling water bath containing lye. They were twisted. I salted them liberally. When the oven opened, they were brown and crispy. He thinks he is getting close. I think he nailed it!
Treme, Season 3 – If you have not experienced the series Treme, you are missing something. Season 3 recently was released and we watched the first 4 episodes this week. Treme takes place in New Orleans in the aftermath of Hurricane Katrina. Because of that, it makes it an easy program for us to like. We can say “we’ve been there!” “I recognize that”… in every episode. The thing is, there is so much more. Whether you know, and/or love New Orleans, there is much here to bring you in. For one, there is amazing music. This is American music. Think about what that means, and it will lead you to the melodies that you will hear on the streets of New Orleans. I am very much enjoying having the characters of Treme back!
This is the New York City version of this week’s good things. Because I was out of town over a weekend, it also is a very loose version of what “last week” means. Traveling does that to you!
It all started with the fact that I was extremely lucky to get chosen to go to a training sponsored by the National Cancer Institute. Added to this was the fact that my hospital supported me going. The conference was in New York City and started last Friday and went through the weekend. I tacked on a few personal days on the end so Dan could come in and we could spend time with Sam and Jean. Oh, what a great time it was.
From a slew of many, here are a few of last week’s good things:
The People of New York City – It seems a cliche to give the people of New York a hard time for being pushy and difficult. On this trip, I have to say, I very much noticed the kindness of people everywhere. I arrived in the city late Thursday, Once I checked into my hotel, I went around the corner to have a bite to eat. I was the only one in the restaurant and I am sure that everyone was ready to go home. Rather than feeling a nuisance, I was treated graciously and did not feel rushed in the slightest. I noticed the same kind of feeling everywhere I went. Walking along busy streets, I noticed that people went out of their way to apologize if they bumped into you. In the subway I got a few “excuse me” and “pardon mes.” Particularly in businesses, I was treated warmly and appreciatively. We buy into stereotypes too easily.
The Municipal Archives – Tuesday morning I went to the Municipal Archives of New York City. I had been in touch with the staff there for a couple years. When I knew that I would be coming to visit, I really got serious. The staff had located some documents that were potentially helpful to the research that I am doing. I was going to be able to get there and look at them! The archives are located at 31 Chambers Street amongst all of the city government buildings. These buildings are pretty awesome to behold. We made our way to the location on a Tuesday morning after a Monday holiday. The subway was jam packed, but easily negotiable. Once I got to the archives and checked in, I became a little worried. We could not find my request. With assistance from the helpful staff, we located the papers and I was able to get to work. It was great! All around the spacious room, people were delving into boxes of records or microfilm. The staff walked about answering questions. There was a young man sitting next to us looking at city planning records dating back to who knows when. Two brothers were looking up family history prior to taking a journey to Eastern Europe. For my part, while the records that I had to look at didn’t reveal much that I didn’t know, there were many interesting things that I found and I made copies of to bring home. It also made me so thankful that items associated with an event that happened more than eighty years ago were filed away in a box and someone from the midwest can send an email and have those items waiting for her when she comes for a visit!
Meeting Some New Friends – Also associated with my research, I got to meet a couple more family members of my research characters. We met J and his daughter for breakfast on Monday morning. We spent a delightful meal getting to know each other and recounting how all of this happened. I also got to hear about A’s special stuffed animal who shared breakfast with us. Because of this breakfast venture, I now know what Halloween costume is perfect for a seven year old growing up in New York City – Eloise, of course! I also clearly understood, once again, what a gift I have been given to find this story. I continue to try to write this history up well. In the process, I have uncovered some interesting things, that I have been able to share with kind, welcoming, accommodating family members. Meeting some new family members and being so warmly welcomed for what I have done was humbling.
Sam and Jean – As a parent, you want to see your children in happy relationships. Unfortunately, there isn’t a whole heck of a lot you can do to secure such a thing. You try to model well, but even that can be challenging. In the end, you just have to hope. So, the best part of the trip was getting to spend time with Sam and Jean. It was our second chance to meet Jean, and it proved to be quite great. I smile just thinking about how good I think that they are together. They seem to make each other laugh a lot – which I think speak volumes. They appeared caring to each other in many ways. On Sunday night we got to take Jean out to dinner without Sam as he was working. It felt easy and comfortable. A very good thing for the week!
Food of New York – This trip provided an over the top food experience. Due to the good food connections that Sam and Jean bring to the table, we had two nights where fabulous New York City chefs cooked for us. At Bouchon Bakery and Cafe in the Time Warner Center, we got treated courses that ranged from a beautiful potato soup to a peanut butter and jelly dessert presentation. At Blue Hill in Greenwich Village, the table kept producing more treats like fresh local vegetables perfectly seasoned with salts, a chicken dish with mushrooms and a tomato sauce that was unforgettable and a pumpkin seed candy that spoke autumn. We also had some nice Belgian inspired food at Resto. Delicious tacos in Brooklyn. Decadently greasy burger and fries at Shake Shack. Chewy wood-fired pizza and yummy appetizers at Franny’s in Sam and Jean’s Prospect Heights neighborhood. Goodness!
It was a fun week. Getting out of town and spending time with co-workers, thinking about how we can do our work more effectively, was inspiring. Spending time in an iconic city inspired me to understand the world in a better way. Enjoying food in an indulgent way was, nonetheless, magnificent. Being with people I love was more than good.
This week, more than most, it was important to pay attention to the good things that slid into my days. My list is actually longer than the five (plus one bonus) that I put down here. The truth, truly is that if you keep your eyes open for good, you will find it.
- I was going through a box of papers (because I am one to have many boxes of papers), and I came across this picture of Sam and Ali that I drew several years ago. It doesn’t look a whole lot like them, but it captures pieces of them that make it highly recognizable. That is me peeking out of the window.
- Believe it or not, one of my good things was the customer rep guy I talked to at T-Mobile. Dan has been traveling quite a bit this month, and he texted me that he was about to run out of minutes on his cell phone. I called up the 800 number and talked to a very nice man. He looked at our account and laughed with me as I pointed out that we are probably T-mobile’s longest served customer (11 years!). He then proceeded to give me some bonus minutes and thanked me for calling and being so nice.
- I work at a children’s hospital. My job focuses on clinical research for children with cancer and other blood diseases. This week, our Grand Rounds’ speaker talked about the progress that has been made in treating children with cancer. A major factor of that progress is that those who treat children with cancer decided many years ago that the only way that they would find answers was if everyone cooperated, treated children the same ways, and combined results to determine what works best. The cooperative clinical trial movement in children’s cancer research became the model for all research. It is why the percentage of children surviving a cancer diagnosis is so high. After the talk, I suggested to one of our doctors that we send out a note to our surgeons and pathologists who help us so much in making our clinical studies so successful. He told me that it was a good idea, but I should go ahead and send it. I sent it out under the names of our research team. The number of doctors who took the time to say thank you for the nice email and express their own pleasure in being part of the solution warmed my heart.
- I finished reading The Great Gatsby this week for about the third time. The copy that I read was the one that Dan had for one of his college English classes. Some of his annotations in the book charmed me or made me giggle. Then, the New York Times had an end piece in the magazine where they showed covers of Gatsby over time. Loved that!
- Dan and I had the best day on Saturday! He had been gone all week, so I wanted to spend the day doing stuff together. I went out for a walk, came home, and then we hit the road. We got an early lunch, followed by going to the theater to watch 42 – which we both very much liked. After the movie, we walked around Barnes and Noble for about an hour. I realized that it had been a long time since I had just done some bookstore browsing. Of course I found some bargains. From there, we did Dan’s birthday shopping, went to a favorite liquor store emporium, bought some steaks to grill out, Dan experimented with a new cocktail that was successful, ate dinner, and, finally, ended the day by watching stored up DVR’d sitcoms. Winner.
- Bonus one: I wrote quite some time ago about going to hear Jules Feiffer and Norton Juster talk. That was wonderful. This week, I found out that there is a documentary coming out about the creation of The Phantom Tollbooth. Lordy me, I can’t wait.
- Going to School – A child that we had enrolled on one of our clinical trials went to school last week for the first time in a very long time. His mom sent us a picture of him in his classroom. He looked great!
- Saturday morning calls – Saturday morning there were calls from both kids just to chat and talk about what was going on. That was a double dose of good stuff!
- Darwin’s House – I came across this wonderful article about the house in which Charles Darwin and his family lived. The article is just full of wonderful descriptions of what the family life must have been like. As a reader, I got the hominess, comfort, curiosity and love that was the Darwin house. One tends to think of Darwin as the investigator and writer, but this article made me think of Darwin the family man.
- Snow tech guy – All of the snow that fell early in the week did not get shoveled before we went back to work. I found a person on Craig’s list offering to do snow clean-up so I called him up while at work and I left him a message. When he called me back, I answered with my usual work greeting. He laughed and told me that he wished he had a fancy name, but he was the snow removal guy. I had a cheery conversation with him about the snow in our driveway and walkway and that he really did need a title for what he was doing. We agreed on “the Snow Tech Guy.” When I came home that night, the driveway and walkway were clear, and a receipt was left, signed “The Snow Tech Guy.”
- The beauty of the snow – As cumbersome and substantial as the snow was, it was really quite beautiful. When I drove home from work on Thursday it was dusky. All of the trees on either side of the street were bare of leaves, but seemed outlined by the white snow that still stuck to the surface of many of the branches. Nature has been quite stunning.
1.Mardi Gras Party – for the eighth year in a row, we hosted our Mardi Gras party this weekend. It is one of those things that we look forward to, and when it happens, it is as good or better than we hoped it would be. Even though we kind of have it down to a science – Dan makes the red beans, I make the muffaletta, he brews the beer, I decorate – it takes some effort to get things ready for almost 100 people to descend upon your not huge house. But it works. The people who come from the various parts of our lives arrive and mingle with old friends and new friends. Each year we have a New Orleans focused project that people have an opportunity to chip in a few bucks to. This year, we came up with $500 that will buy books for Ali’s first graders – each will have books they can take home for their very own
2. Why Facebook can be such a good thing – Several months ago, we went to Templeton, Iowa to tour the Templeton Rye distillery. With our friends, we drove up Friday night and then got to the distillery at for the 10:00 tour on Saturday morning. The tour was neat and interesting and we had the prescribed taste of delicious rye after the tour. We thought that was where it was going to end, but it did not. We ended up leaving Iowa at about 4:00 that day after having gotten to know the Templeton group much better, and gotten some lunch and bowling in at the local lanes, We spent the day with new friends, Michael and Molly who made the trip to Templeton from their home in Des Moines. All of us connected on this wonderful day, and we promised that we would reconnect. This weekend we did. Michael and Molly came into town for the Mardi Gras party. We got to have dinner with them Friday and lunch with them today too. I am guessing that without Facebook and the ease it provides to keep connected, we wouldn’t have had this wonderful chance encounter continue.
3. People who know how to repair boilers – We have steam heat – radiators; the whole business. When it is good, it is very good. When it is bad, it is … so loud! Last weekend, something happened and our house was filled with the most amazing clanks, bangs and kabooms! At times, it seemed like something consequential was really going to happen, but it would eventually settle until it would happen again. This was really difficult for the sleeping. Luckily, there are people that will come into your house, diagnose what is the matter with your poor boiler, and make it better.
4. Opportunities – This weekend got to go to Silver Springs, Maryland where some very smart and dedicated people met with FDA personnel. It was a great opportunity to sit in on something so outside of my norm and see how it works. I felt very lucky.
5. Research – Another work thing. For a couple years now, I have been working with some great people as they create and carry through new projects with the intent of making improvements in the area of childhood cancer. This week, all of those people got the opportunity to tell their stories. It was amazing! Each of them spoke their project in language that anyone could understand. I felt so proud to have been a part of it, and it I am so excited to see what is next!
This is something you may or may not know. A child diagnosed with leukemia today has close to a 90 percent chance of survival. This is still an amazing statistic to me when I consider that that same child, had they been born the year I was born, would have had almost no chance of surviving. The reason that this phenomena has occurred is because of the bravery of children and parents over the last 50 years. When there was no hope, parents agreed to allow their children to be treated with new drugs. When there were signs of progress, parents continued to sign up for clinical trials so their child could be part of the answer. Today, even when we win so often, parents and children still enroll on clinical trials because they know that those remaining percentages are not just numbers – they are children.
I spend a lot of time thinking about this, both in my job and in my work on my book. In my job, more often than I like, I have had to spend time justifying why an insurance company should have to pay for a child’s treatment when they are on a clinical trial. There are insurance providers out there who are eager to jump on those words and label it experimental and ineligible for coverage. These are not crazy new therapies that we are talking about. These are, most often, tweaks to the standard of care treatment. The intent is to see if something new added or something old subtracted can edge up that survival rate. We also want to bring down the number of kids who have lifelong complications from the powerful treatment that they endure to cure their disease. I experience these disputes happening more often. I fear a result of this will be less willingness to enroll on one of these trials.
I was having one of those days yesterday at work. The issue on board just seemed so simple to me, but nothing that I was saying seemed to make a difference. There were several people involved, and we seemed to be getting nowhere. And then Ellie called.
Ellie is one of the family members of the main characters in the book that I am writing. I had a heck of a time finding Ellie. I knew that she existed. I knew she had married, and I had what I thought was her last name. I searched databases and sent out numerous hopeful letters. I missed many times. After more than a year of this, I came across an article that spelled her name a little differently than what I thought. I went back to work, and I was pretty sure that I found her. I sent another letter. The Saturday morning that my phone rang and I saw the caller ID is still crystal clear in my mind. My heart double-clicked. I answered the phone not knowing if she would be okay that I contacted her, or if she would be angry with me.
We talked several times over the next few weeks. The first conversations were cautious and polite. I was not sure how much she knew about the story that I had, and I certainly didn’t know her well enough to understand how much she would want to know. She was a widow well into her 80s. Who was I to bring my business into her life?
Turns out, we have become each other’s gift. I have filled in blanks for her. Some were things that she had not cared to know of at the time. Most were things that the family just did not talk about. I sent her pictures, articles, a recording of her father’s voice. She sent me pictures, documents, and has shared stories from her memories. Finding her has been more than I could have hoped for. We are now a part of the other’s life and we talk now just to catch up. Sometimes something new comes up that one of us wants to share, but mostly it is just to chat.
That is what happened yesterday. Ellie called to chat. The big news was that she had returned from getting her check-up at a major hospital where she had gotten a new heart-valve as part of a clinical trial. It had been a year, and part of the trial requirements were periodic follow-up visits. We talked about how that meant traveling several states away, but it was important to her to have her information kept as part of the study. It was important for her, because this new heart valve was a miracle for her. She was back in her twice weekly bowling league!
Talking with Ellie made me happy. I asked her if she would share with me any issues that she had with insurance. She laughed and said she had been told that she would not be covered, but she fought it, and she won.
If that’s what we have to do, that is what we will do.