There's a Conspiracy Afoot

Some days are just great. I had one yesterday. Nothing particularly splendid happened. I had a good day at the store--it's our slow time, but I had a few great customers come in. I don't get as many "virgins" anymore, but I had two yesterday--people who are so very excited to have found us and sense that we could be positively life altering. Then I went to Girl Talk's Night Out. All my Columbia women friends need to check out gotogirltalk.com and come to the next event, but I might not be there--it's at Starbucks and I avoid coffee. Last night it was at Boone Tavern, downtown, and as I was driving past the police station, the horn in my car started going off while a nice police man was crossing the street. I can't make it stop, something about the wiring being off--I drive a 1993 Saturn that I adore, but the key is stuck in the ignition, the engine AND brake light are on, and now sometimes the horn just goes off inexplicably.

But it made me laugh, and to be honest, I haven't really laughed in a while. The last time I really laughed was when Bo was waiting to go into surgery and he was just on a tear. I wish everyone could know how funny he is--sometimes it scares me that his two best career options at this point seem to be baseball and comedy. Besides his ability to "strike a pose" or dance at the oddest times, he can quote inappropriate movies like the guy he is. So as we wait for an hour and a half in pre-op--a medical lesson learned, the earliest surgeries are scheduled at 7:00 at our hospital and they tell ALL the 7:00 patients to arrive at 5:30, but they can't actually check everyone in at the same time, so it's best to arrive a little late-- since we were the first ones checked in that day, Bo asks "so when they take out the tumor, are they going to cut me open, take it out, then sew me back up?" And then before I even get a chance to process, he starts laughing and says "well of course they have to sew me back up, or it will be like the knight on Monty Python and I'll be spurting blood and saying get back here you sissy..." What could I do but laugh, and as I bent my head to laugh, Bo says "Mom, you have white hair, you need to get your hair colored, no one is going to believe you're 31 if you have white hair..." Thanks Bo, I think to myself, but I am still laughing about the bloody knight that I don't know what to think, but he doesn't stop. He looks up on the wall and sees an ad for the satisfaction survey and asks "hey, did we get a survey, because you didn't give me a survey, and I could tell them stuff to improve things around here, because last time it took them 45 minutes to bring me my mac'n'cheese and it was cold Easy Mac!" Now I am afraid the doctors are going to think I have gotten a hold of some nitrous, and I might wet my pants, but he doesn't stop. Our surgeon comes in and I had told Bo that he was in my store during one of our Village Festivals the weekend before, so Bo says "hey, you were in my Mom's store over the weekend, have you been to my Mom's store, because you should..." The poor guy didn't know what to say, but he's a nice man so he just smiled and got onto his business.

But, I also laughed to myself while I was at Boone Tavern because I ran into Bo's first crush! Rachel is legend in our house because she used to work at Target AND Schnuck's, our grocery store. When the boys were little odds were that on any given day, I would have to go one or the other, sometimes both and sometimes more than once, so Rachel was like family. This would be eight years ago when she was a college student, but then she was gone for a while and now she is back, a counselor at Bo's high school! But, when he was a baby, he always just lit up when he saw her, and one day we were checking out at Target and while I was unloading the cart, harried and in a bad mood, I heard him cough, and thought, "gosh, please don't tell me he is getting sick," and keep unloading, but I hear another cough. The third time I looked up and I realized that every time he coughed, she would smile at him and he would giggle. He was FLIRTING at the tender age of ONE! She is a beauty, so I can't blame him, but I told her the story at Boone Tavern and she said I made her day.

I also finished a great book. I haven't read any escapist fiction in over a month either. Final Theory by Mark Alpert is great, part of it takes place at Carnegie Mellon, a fictionalized version, all the building names are wrong, but still fun, and a perfect combination of nerdy science and intrigue. But, it made me have weird dreams, and it's raining AGAIN, and Pierce has a toothbrush that won't turn off, so it kept waking me up, and that is why I am blogging about nothing at 3:00am. The universe is conspiring to keep me awake, why I wonder?

I also talked about Bo and our situation at Girl Talk last night, something I really also haven't done yet. I talked to Kathy who knows the story, and has been immensely helpful and always knows just what I need to talk about to feel better. Yesterday she shared that someone close to her has also just been diagnosed with cancer and it was good to feel for someone else and be in a position to offer help, and not be on the receiving end! I a talked to Sharon whose husband is one of my landlords, but I am not really sure how their business arrangement works, I just know that when the weird alarm goes off and Roy is out of town, I call Don and say "If you don't make it stop, I might have to jump off your building!" Sharon has ever so graciously given me space NOT to talk about it, but I always knew she would listen if I ever needed it, and then I unloaded on some poor woman who used to be a social worker at Missouri Cancer Associates, a private treatment group in town (but they only treat adults). Our social worker at the hospital came by on the day we received Bo's PPB diagnosis, told us she was there to help and said "here's your application for the Make a Wish Foundation." Seriously, normal healthy people think that Make A Wish is where terminal kids go to get their last wish, as far as I was concerned we were not given a terminal diagnosis, but that was the night I started the blog, I wasn't sure about anything anymore. Poor Bo cried when she left and asked Jay and I separately if he was going to die and if his condition was life threatening. So much for the help! I had to get on the internet to find out that you don't actually have to be terminal to have a wish granted, but really should I have had to do that? And don't even get me started about the Child Life Specialists who are young enough to be my kids, even at 31, who are also there to help... I wanted to scream "where is the freaking handbook?" Don't you get an "owner's guide" or an insruction manual when you get a cancer diagnosis? And then I thought, maybe that is why I will start a blog, and I will collect all those little things and put them in a booklet that can be given free to anyone who gets a terrible medical diagnosis. It will be filled with all kinds of tips, resources, and even things to make them laugh, because laughter IS the best medicine.

And so I have rambled on about nothing for quite long enough, I think, my dogs are getting on my nerves--I am not going to throw balls at 4:00am, but before I go, if you have not yet seen The Last Lecture, you should, you can still find it on YouTube, I think, but when you put life and everything in perspective, it all becomes more enjoyable and more precious. Maybe the conspiracy was really trying to get me to clean my house, but I dodged that bullet pretty well! Have a good day, Lisa

All I Want for Christmas is My Two Front Teeth

It took me about the whole of first grade for my two front teeth to grow in and they made me go to SPEECH THERAPY for it. Every day I would count out a cup of beans--sixty one, sixty two... Seriously, I was never going to get any better at it until I grew teeth and the whole experience was just horrid. "Try harder, Lisa, you can do it." Do what, grow teeth, what if they had never come in. What if my parents had to buy those two front teeth. Unfortunately, I've had to have several crowns--they cost somewhere in the vicinity of $600, so how much would it cost to implant two teeth. We had a joke last year that Pierce was getting braces for his birthday--he really did, the very day after his 11th birthday, he received a lovely palate expander. He was not as appreciative as the $5000 price tag would lead you to expect... But no, we have never really given our kids medical services as a gift, but what if we had to. What if paying for medical services had to come as a tradeoff for something else?

I have seen averages for breast cancer treatment of $250,000-$500,000--here in Columbia that would buy a nice house. Childhood cancer, two years of leukemia treatments can easily run over a million dollars. Bo's bills right now even without surgery are close to $50,000--but we have great insurance, and except for our out-of-system consults, we will probably not have to pay more than about $500. But even that fact still changes our life forever. Either Jay or I will need to be tied to a group health insurance plan forever. Under most other plans his condition would be considered pre-existing, and as a childhood cancer patient, that means a lot of insurance companies would consider any cancer pre-existing for the rest of his life. Since he will probably have at least one recurrence, without group coverage, we would have to pay the next surgeries. Jay loves his job and has never really considered another field, and I have longed to go back to government for a long time, so we are just wired for stable group health insurance jobs.

But what about the people who aren't? I depend on my auto mechanic, my plumber, electrician, all the people, most of our population, in fact, who work in small businesses that rely on the private health insurance system to take care of them and their families. When you spend enough time in a Children's Hospital, you see the toll it takes on families. Lots of children don't have people to be with them because their parents HAVE to work every day to keep income or whatever insurance they do have. How scary must it be for a child to have to sit alone through a chemo treatment, or a night after surgery with no one to hold their hand. Don't get me wrong, nurses are FANTASTIC, but they are not the same as the constant presence of a loving family member.

What if we had to just go with our first diagnosis because we had to decide that for financial reasons, three other opinions were not possible. What if, faced with a rare treatable cancer with clinical trials at another institution, we couldn't even consider it, for financial reasons. And now, we have every reason to think and hope that Bo will live a long and healthy life. But what if, for financial reasons he can't pursue his desired career. This diagnosis will cost him for the rest of his life, it will cost him in higher life insurance and poor access to health insurance.

So, Jay is finally glad I wouldn't let him get a new house this year--I hate moving and it was not the fun I was looking for right now! We need to save every penny we can to make sure that Bo CAN live a long and healthy life and have access to the best treatment there is forever. And we can do that, we are simple people with simple needs and relatively good earnings potential--but what about the people who can't? Do we really believe our medical system is optimal--shouldn't we be pro-life forever and make sure every child, of every parent, not just the poorest kids, but the kids of our auto mechanics and plumbers, contractors, electricians--the hard working independent entrepreneurs who make our country work--have access to the care they need when they need it?

I promise I am not going to make my blog political, but spend just one day in pediatric inpatient and listen to all the stories of people who lost their jobs because they had too many medical appointments, single moms with other kids and no family, people who travel long distances to a larger hospital to get better care, but then also have to leave jobs and health insurance behind. What if all you could get your child for Christmas for the next ten years was installments on your 20% of a $1 million cancer bill? With a heavy heart for the noble and selfless people I met in the hospital, and Taci and Jacqueline who I think about every day, Lisa

The Fight Against Terrorism

War and cancer have a lot in common. And there have been a lot more practical pieces written on war than on fighting cancer. So, as we try to decide the next step in our battle, let me refer to what is commonly known as the Powell Doctrine. Caspar Weinberger originally identified eight questions that need to be answered affirmatively before taking military action:

1. Is there a vital national security interest?
2. Are there clear attainable objectives?
3. Is there a complete cost/benefit analysis?
4. Have we tried everything else?
5. Do we have an exit strategy?
6. Have we considered the consequences?
7. Do our people support it?
8. Do our allies support it?

Powell's expansion to the questions was an assertion that once we choose military action, we must do so decisively, with overwhelming force and minimize our own casualties.

So, Bo has a form of cancer. We have two plausible diagnoses, similar, though they differ on the continuum of malignancy. Metastatic benign pleomorphic adenoma and myoepithelial carcinoma are both salivary gland neoplasms. Neoplasms are tumors, and the diagnosis has been complicated all along by the fact that they found a second tumor, relatively far from the first, that is histologically similar and in a node. Nodal involvement is generally considered worse than second tumors in some other sites because nodal involvement can signal lymphatic metastases which means the cancer has become more systemic. Like flus and colds. The conditions that can only spread through direct contact are a lot less scary than the ones that can travel through the air and live a long time. AIDS may be a scarier condition, but it is still a lot harder to get than tuberculosis or the flu which can become epidemic very quickly.

And in that way, cancers are like people. Some are very geographically specific. Jay has a very dear aunt who starts to get heart palpitations when she leaves Maine soil. Bless her heart, there was a time she was younger and more adventuresome and she could leave for short times, but she could never happily take up residence anywhere else. A lot of cancers are like that, they can try to move, but adjusting to a new environment, different food, weird neighbors, all takes too much work and they give up. Stronger cancers do take up residence in other places, they thrive and their children leave home, travel to distant places and successfully take over their world--and that world would be our bodies.

So that little node has always been our bugaboo. Is it just a freak accident like the first tumor? Pleomorphic adenoma is a relatively common benign neoplasm of the salivary glands--they are usually identified near the parotid gland, in front of the ear, but can also be found in other salivary gland tissues, including in the lung. In about 20% of people, they are removed and that's it. In about 60% of people, there is a recurrence, or a couple, they remove it again, and that's it. And in about 20% of people, this "benign" tumor metastasizes and becomes unruly. Myoepithelial carcinoma is our other diagnosis, higher in the malignancy spectrum and much rarer. Carcinomas are usually treated with chemo. But the problem is that the "epithelial" nature of the tumor makes it an adult cancer that is treated with adult drugs--as one of our oncologists said--"big guns" that are not normally used or tested on kids.

And so back to the Powell doctrine and the war on terrorism. It is very difficult to answer those questions affirmatively and commit to bringing in the "big guns," ever, it seems to me, and we won't get into politics, but I think Powell felt the same way. So, as we fight our little war on cancer, it is akin to fighting terrorists in our own country. What if we found out tomorrow that there is a terrorist cell in Columbia (or your town) planning a devastating attack? What if we know that we have one opportunity to drop just one bomb and end their plans forever, but it would cost the lives of about 1000 innocent Columbians and save tens of thousands, maybe hundreds of thousands more. What if we also know that the bomb would have to be dropped near the University reactor (or in your town a chemical plant, the dam or some other dangerous target), thus harming Columbia and Columbians, possibly forever. If you choose not to, they may fail this time and sulk away never to be seen again. More likely, they will continue working, with outcomes that could still be catastrophic. The Department of Homeland Security wants YOU to make the decision NOW.

It may seem like a somewhat twisted analogy, and it is extreme, but life and death decisions are made every day. Our newspapers the past couple days have been a forum for debating the recent police use of tasers that resulted in serious injury to a suicidal man. I can't imagine having to make those decisions every single day, I am having a hard time just this once. But that is where we stand, we have not been given a definitive treatment recommendation yet, but like the whole process, there is always a continuum. We know that we will have to choose either to watch and wait, or opt for some form of chemo. But by the Powell Doctrine, it is too hard to say that we are sure there is a national security interest and it is not possible to weigh the costs and benefits. Being in a position to decide to take definitive military action in a nine year old boy that may save him, but could also ruin him forever is an uncomfortable place to be.

In some ways we are very fortunate. We are pretty sure it is not pleuropulmonary blastoma or carcinosarcoma. But on the other hand those devastating diagnoses REQUIRE big guns--there is no alternative. Having to make decisions in a very gray world is very difficult and very scary. I kind if wish I could be more pessimistic or more optimistic and just "know" that we are lucky and everything is going to be great, or that we just have to do everything we can and go at it with everything we have because we can. I feel like Kermit the Frog when he sings "it's not easy being green," but he got the color wrong, if the muppets were in black and white, he would be just another shade of gray, and that's way harder!

Thanks for listening, giving feedback, and being there. Bo has had an amazing couple days. The support of the 11-12 DBLL National All-Stars has been awesome for him in a way I could never have imagined. And I like to think it's been good for the team--after losing their first game and adopting Bo, they are on their way to Regionals in Indianapolis! Could little DBLL send another team to Williamsport? They are fighting for Bo and he is fighting for them, good karma does make a difference, and spending time with them yesterday, getting to be a real boy again after six weeks of almost full-time hospital and recovery was great. He laid down on our bed last night after we got home and said in a very tired voice "Today was a great day." And so you all have a great day too, with love, Lisa

Cancer 101

The next couple posts will be more educational and dry than most of my previous posts. Right now our mental states are "all business." We have been rapidly collecting and analyzing all the information we have gathered and consulting wtih anyone who knows anything who will talk to us so that we can understand our diagnoses and make decisions about treatment. Therefore, there is no room for philosophy or emotion, all that has been put aside for later so we can have clear heads.

But, before we explain our diagnoses and the dilemmas we face in deciding our next steps, it is probably useful to do a brief overview of cancer. We sure didn't know a darn thing about it until a few weeks ago, so we are sure that someone might be in the same boat. Besides, it helps me to think if I write it all down. And, as always, any errors are totally mine and anyone with more knowledge should feel free to correct me.

Basically, cells in our body divide and make new cells every day. Some cells do not regenerate at all, or often--nerves, for one. And some replicate a lot, like our entire GI tract. Every potato chip makes small tears in your mouth and it fixes itself every day. A PET scan illuminates rapidly dividing soft tissue cells and a bone scan shows bone activity. So in most healthy people a PET scan will light up the heart, GI tract, and a few other organs. Bright spots in your liver or in the brain are not a good sign. Bo's bone scan lit up all his growth plates, but did not light up any areas in his chest where the tumor was.

Sometimes cells don't divide very well--they make mistakes. Sometimes we know why, and sometimes we don't, and normally the body kills them off and they are replaced by healthy cells. In cancer, those freaky cells replicate themselves and grow stronger, steal blood from the rest of the body and become their own little organisms--tumors. Leukemia is slightly different, but it takes over the blood, and lymphoma-type disorders take over the lymphatic system. Some tumors are benign, and some are horribly aggressive--blastomas, for example. We also know that some people lack tumor suppressing genes and grow cancer really well, and continuously stressing the same cells over and over causes cancer through too frequent replication and gene mutations--smoking causes lung cancer, chronic heartburn becomes esophogeal cancer, etc. And as we age, cancers become more frequent for the same reason--our bodies just wear out.

For that reason, most adult cancers look the same and develop the same. Prostate cancer, some breast cancers, melanoma, and others look identical under a microscope and treatments are pretty well developed because they can be tested on many different people. Childhood cancers are rare. According to St. Jude's, for every 100,000 kids under 15, every year 14 of them will be diagnosed with cancer. Some cancers are the same, and many have names--Wilm's tumors, retinoblastoma, Ewing's sarcoma. But some are rare, and sometimes children develop adult cancers. In general children get what are called stem cell cancers--kind of like freak accidents. Adults get epithelial cancers, which affect the linings of the organs, cavities or body surfaces--the cells that interact with the environment.

There are three ways to treat tumor cancers--surgery, radiation and chemotherapy. Surgery is obvious and usually desirable. The goal is to remove the entire tumor, without "spilling," and with good "margins" so you leave nothing behind. Sometimes tumors are inoperable and sometimes there is fear that not all of it was removed. Then you consider "adjuvant" therapies. Radiation and chemo agents destroy tissue--both good and bad, but the theory is that good tissue heals itself better than cancer cells. Chemo agents are also selected because they work better on cancer cells than on healthy tissue. They stop cells from dividing, and all cells divide differently, so if they can interrupt the processes in the cancer cells without affecting healthy tissue, that is ideal. And, that is why there are different chemo agents for different cancers. Sarcomas have different agents than gynecological cancers, etc.

But all cancer treatments have risks. We know the common risks of surgery; anesthesia problems, pain, accidents, etc. But the risk of radiation and chemo are much greater. Besides the very true fact that some people die from complications of treatment--toxicity, major organ damage, and infection are just a few of the immediate risks. Late effects are also not uncommon. Heart problems, hearing loss, nerve damage, infertility and cancer, especially leukemia are all more common in survivors of childhood cancer than in the rest of the population. Additionally, some chemo agents have a much greater history in the juvenile population than others, so in effect they are "safer."

In conclusion, once a cancer is suspected, treatment and identification begins. Often biopsies are performed so that identification can be first. In many cases, like ours, the simplest biopsy was not definitive and it made sense to attempt removal. Sometimes radiation is performed before surgery to try to shrink the tumor, and after diagnosis, radiation and chemo may be recommended, also. Ongoing scans and tests tell whether treatment is working and patients are observed for a long time to ensure success and or recurrence.

So that's the condensed version. My next post will explain our diagnoses and our dilemma.

Eenie, Meenie, Minie, Moe...

Experts are amazing. They can look at something 100 other people look at and tell you 100 things that not one of them noticed. I am not an expert in anything, I don't even have a discerning eye for anything specific, but that's okay, because I appreciate a LOT of things. I am not an expert cook, I don't have a terribly accurate sense of taste, or a very sophisticated palate, so no one should ever be afraid to cook for me--I like Kraft Deluxe and even a well-made Hamburger Helper dish (I do not like Easy Mac and no weird ground beef!). I can't tell good art from bad, but I appreciate most of it, and I don't have a good ear, so I appreciate lots of shows others may pan. Not everyone can or should be an expert at everything because life is too short not to appreciate the heart and effort that goes into a lot of things that are less than perfect. But there are people who can identify flora and fauna by the tiniest trace of a seed, a footprint, or a sound, and doctors and pathologists who can find things that no one else can.

The key is finding them. How do you know when you need an expert, and how do you know when you find one? We buy art because we like it and go to shows we think we'll enjoy. We never consider it an investment and we do not keep a cultural scorecard that requires we see at least five of the best performers as ranked by ________ (I have no idea who might do that.) every year. When we need our eyes checked we go to the optometrist. Our family has three and they may not be the best in Columbia, but none has ever disappointed us. We also have good hospitals, three of them, and several specialty centers filled with good doctors--some of the best in the world--in their specialty. And that's where pediatric cancer gets a little dicey.

We have great pathologists and a great oncologist, but we only have one of those--she can not possibly be an expert at EVERYTHING. Nor can any of our pathologists be experts at pediatric solid soft tissue tumors. There are less than 15,000 cases of pediatric cancer every year and about half of those fall in the leukemia and lymphoma families. Of those 7500 cases, less than 5% of them are lung tumors--less than 50 cases per year, how many pediatric lung tumors could our pathologists ever have had the opportunity to examine? So we looked for experts, we found one, the first ones with the PPB registry. But admittedly, their expertise is PPB, and they found us another expert, one who deals with pediatric tumors, then we found the some sarcoma experts, and now we have three votes in, all different diagnoses.

I am going to wait until we get the fourth to lay them all out, but we called our own "tumor board" on Tuesday. We called three friends with cancer expertise and over tortellini and wine, we examined the pathology notes and two diagnoses and raised a few questions. Our third consult, Dr. Vargas delivered the third opinion on Wednesday which led us back for another CT scan (Which was clear as far as we know.) and a review by another specialty surgeon in town, which has not occured as of yet. But when our final opinion comes in, hopefully soon, what will we do, how will we pick? Our hope is that we get two votes for one diagnosis, that will make it a lot easier, but otherwise, will we toss a coin?

The thing that is most striking to us, though, is the crazy amount of information that exists, and still the startling lack of knowledge, and the time it takes to wade through those volumes. While there may only be 50 pediatric lung tumors every year, all 50 of those parents are faced with the same situation we faced. If I were a single mother in rural northeast Missouri who was told my child had PPB, what would I do? What would I read? Who would I call, and with what time? Every child deserves the best chance for a right diagnosis and quality care, and if we are truly a compassionate society we have to make that happen.

Bo will get that care, thanks to all of the amazing people that have helped, through our great University medical system, research, prayer, and support. We are humbled by that, but troubled that there are others that have to face this incredible situation without that same level of support through no fault of their own--no child deserves less. Things happen for a reason, and I am thinking that in some way, Bo was chosen to face cancer so that I, and or someone close to me can help carry the cross for others like us--I know all the right people with all the right skills talents and compassions.

I will post an update when we get our consult from Sloan Kettering, but I am not sure when that will be. We are really hoping to hear something today. Thanks again, everyone for everything, Lisa

Pathologists are the Bomb!

There should be baseball cards or calendars, or something that elevates pathologists to the status they deserve. I know that teachers, the men who haul our trash and lots of other common professionals do not get the respect they deserve, but when was the last time you even gave a thought to PATHOLOGISTS? Sure they are doctors and we generally respect doctors, but since they don't have patients in the commonly accepted sense, most people have probably never given their PATHOLOGISTS a second thought. Radiologists probably fall in that same category and one day I may write an ode to them, as well, but today is all about pathology.

Because I can be kind of, sort of pushy when I have to be, and because Dr. Vargas is exceptionally kind, she called me today immediately after receiving my e-mail to tell me that her preliminary diagnosis is not PPB, PB or carcinosarcoma, but a salivary gland tumor--way weird, but apparently the lungs are basically salivary glands that secrete mucin. (Please note that any medical errors in my blog belong totally to me!) This is still rare, especially in a child and many of these cancers can be persistent and difficult, but the one sigh of relief is that they are not as aggressive as any of our previously diagnosed cancers. In that regard, they are often characterized as indolent, though researchers dispute use of the term, we feel much better waiting for more information before beginning treatment. PB and PPB are so scary, they can literally grow in a way that a person can actually see it, and carcinosarcoma can spread just as fast, so even the thought of seeking more opinions was more than a little scary. So on a scale of cancer with 10 being the worst, 1 not so bad--I guess little tiny skin lesions can be considered not so bad, but maybe I am wrong and insensitive, if so I apologize--we have moved from 9&10 to at least 8 and maybe even lower. So, for today we are not out of the woods, but we think we see light! We will not have any final results or recommendations for at least a week, stains take a long time, but I feel we are getting closer.

And back to the pathology thing, after I come up with a new national greeting, I am going to start a campaign for recognition of pathologists. One of my favorite obsservations from "The World is Flat" was that the reason we have some of the competition problems we have is because in the rest of the world Bill Gates is Britney Spears, and in the US, Britney Spears is Britney Spears. You could probably say the same thing about pathologists. Instead of revering people like Dr. Phil, names like Dr. Loy, Dr. Dehner, Dr. Hill and Dr. Vargas need to be household names! Thanks to all the pathologists who toil in the dark recess of hospital labs so that others may have life! Truly, Lisa

"How Are You?"

I have the greatest friends in the world and have had the privilege of knowing some of the best people. Every single day I think how lucky I am to know them, and most of them are not even friends, they are just interesting people whose paths cross mine often enough to improve my life. I like to think maybe I offer them something, but really from a selfish standpoint, I am happy just to have the opportunity to bask in the glow of genius! And by genius, I am not talking just rocket science, I know a lot of people like that, but I just mean the genius it takes to thrive in our crazy complicated world.

My lifetime BFF is Kim, and she is the person I go to when I know I am being a little self-centered and I need to give other people more credit. She is the one who would never turn down a homemade offering, even if it's candied hippo liver. She says that when people go out of their way to share a piece of themselves with you, it is terribly wrong not to accept and be truly honored, but I still say, "it's weird organ meat, and possibly dangerous!" She is 100% right, though, and while I will never be the good and selfless person she is--sorry but I will NEVER knowingly eat your gift of organ meats, I at least have learned to blame it on my doctor! Kim has given me so much advice over the years, I could probably write a book, but the piece I think of most is "never ask a question unless you REALLY want to know the answer." Do these pants make my butt look big, isn't this neon green just the best color for me, and what do you think of my new orange ceilings are all questions you really shouldn't ask to anyone but your BFF!

And that brings me to "How are you?" We, as a nation need to come up with an alternative to that seemingly polite quotidian inquiry. I know better writers have addressed this issue, and I have been guilty of asking it way too many times, but until someone gets on the bandwagon and really makes an effort to come up with something more satisfactory, we seem to be stuck with it. I ask that question in some form more than a dozen times a day at the store, and no less than 10 times in the past three years, I have had women and a couple men start crying. I like to think it was because I have a healing aura--a voodoo doctor told me that once--and that for just a moment I was able to let them relieve some stress and make their load just a little lighter. But possibly, they cried because what they really wanted to do was scream:

"Not well thank you. I am on the verge of a nervous breakdown, my marriage is a wreck, my sister has breast cancer and I am taking care of her kids, I have a work deadline I am never going to meet, I am only here because I have ten minutes before dance and I have to take something to a potluck and feed all the kids at my house and you have the unmitigated audacity to ask 'how are you?' can't you tell I am not well and now is not the time to discuss it, but if you have an hour at 7:00, I will gladly clear my schedule because I sure could use the opportunity to unload."

And so now, as I go about my daily life, shopping, taking care of normal ordinary chores, those are the only moments I spend alone, the only time I allow myself the luxury of sadness and fear, only to be faced with the pretty young sales associate who smiles and says "How are you on this nice sunny day?" Fear for the possibility of scarring the poor young lady for a lifetime is the only thing that keeps the tears at bay, but then I am forced to shrug her off without saying a word, so she can only think I am a rude shopper, and it sure isn't in my agenda to want to turn an optimistic young woman into a jaded adult, but I also couldn't risk mascara running down my face when I only had 20 minutes to get back to work with the cilantro.

So, because I know I am constantly surrounded by genius, I implore everyone to come up with some alternatives--try them out and send me your best ideas. As a person who constantly strives to offer the best customer service, what are the best greetings? During football season in Texas, the standard greeting is "How 'bout dem Boys?" Not a bad one, even as a non-fan, it is a totally easy greeting--I can safely reply, "totally missed the last two games" and if you can talk and you know the other person is receptive, you can say, "I missed the last two games because my mother passed away and I had to be out of town." But either way, you can take a safe exit. Of course there is the standard weather greeting "it sure is hot today," or "do you think spring is coming soon?" But they are too old, and now they tread so very closely to being political, so I try to stay away from those. I knew a man who always said "How's tricks?" I never knew what that meant so it always gave me pause and I would just smile and say "Fine." That works for him, and maybe that's the key, we all need our own. In my current role, I could ask everyone "What's cooking today? but that just doesn't feel right, maybe I just need practice. Gas prices rising, economy falling, bees and blue crabs are disappearing--now is the time for a national optimism movement that starts with a new greeting. so let me know when you find a good one! Thanks from the bottom of my heart, Lisa

The Waiting is the Hardest Part

I am the only one in my family that doesn't like Tom Petty, but now I have that running refrain in my head always! It's really almost embarassing that it has been over a month and we still are not totally sure what we are facing and what we are going to have to do about it. But, our meeting was cancelled yesterday, our doctor is still waiting for a few opinions from colleagues and the slides, etc. for our formal second opinions were only delivered yesterday. So, we will wait to hear from them before we start treatment. Therefore, we won't have any real updates for a couple days.

As always, we appreciate all the calls, letters, and e-mails, I am going to have to scrapbook them, or something, I suppose. We may need evidence of all the offers to clean our house when the going gets tough! Just joking, but I am not a keeper of stuff, I am, in general a purger, but so many of the notes we have received have been too precious to just discard. I will work on that in my spare time! With love, Lisa

Shades of Gray

I went to a weird college. Carnegie Mellon University is home to the geekiest geeks and the artsiest artists--which makes for the most eclectic combination of people you could ever assemble and at 4500 undergrads (That's what it was when I was there anyway, and as a tour guide, I am an encyclopedia of weird facts about my school!), you know all of them. And people go there for that reason, my friend John was a mechanical engineer who went on to operate a music recording studio. And I knew designers who went on to build fighter jet cockpits or become marketing executives for accounting firms--crazy stuff. But the Halloween costumes were amazing. Set a bunch of artistic engineers and technical artists loose on the wildest holiday of the year and you get the best costumes. One of my favorite was "Shades of Gray." Three guys in superhero tights and capes--white, gray and black with 0, .5 and 1, respectively, on their chests. I thought that was hysterical, but that would be nerd humor, I know, I was a geek not an artist.

But life is like that. Sometimes things are black and white, but mostly they are gray--.1, .3, .5, or .8, how can you tell the difference without a pantone guide? As a parent, life is really gray. Every single day I wonder if I did the right thing. Did I do enough, how much therapy will my child need because I made a joke about his lame attempt to climb that tree? And when it comes to medical matters, how do you differentiate between black, white and gray? I am a huge advocate of finding the BEST medical care when life hangs in the balance. But how do you know when life is at stake? We love our ENT/Allergist, I think he is a god, but he is probably not the best--there is always someone better, right? But when Bo needed his tonsils out, I didn't read journal articles or search for the latest in tonsillectomy technology--that was black and white. Many cancers are routine--some types of leukemia, breast cancers, even sarcomas have standard protocols. But when there is no mold, what do you do?

We have gone around and around the last couple days. Our oncologist is at a conference this week with virtually every other pediatric oncologist that isn't at another conference. One day I may tell Bo's birth story, but it all revolves around our midwives being at a conference--what is it with Bo and conferences? So we talk to people, Joyce, a local mother of a young girl who survived a very rare rhabdoid tumor recounted her experience at St. Jude's and said "you only get one chance." And unfortunately we live in a town with way too many doctors who all have great advice. So on the eve of what was supposed to be a meeting with our oncologist to go over the treatment protocol, we decide we need a second and third opinion.

Once again we are in a holding pattern. The diagnosis was too inconclusive for us and the pathologists who worked on the diagnosis in St. Louis recommended another pathologist at Dana-Farber with a specific expertise in non-PPB pulmonary tumors, so the slides are being sent for a second pathology review. Others recommended the pediatric sarcoma group at Memorial Sloan-Kettering in NY, so more slides are going there for a full pathology and treatment recommendation. Not that we don't trust our oncologist, we do, but it is our very own University Hospital that has been running a commercial about one of their new centers that goes something like "If two heads are better than one, isn't 14 heads better than 2?" I guess that's how many doctors they have in that particular center--maybe the ad is not all that effective since I can't remember the center, but it works against them in that I feel decidedly cheated that we only have ONE pediatric oncologist! I was telling her nurse (who is also tremendous) today that for all I know they might both be leaving, and then where would that leave Bo? We would have no heads, no heads is NOT better than one!

So we wait, we ponder what it would be like to move to NY for a year, if it comes to that, wonder what we do if we get two new completely different diagnoses, worry, and read more scary articles we don't really understand... If I had known how much work it was going to be, I never would have let Bo get cancer, that's for darn sure! But on a positive note, he is doing really well, almost all healed from surgery and port placement. We have the in-law apartment almost fully outfitted, but waiting to see if we need to move to NY before we spend money on a bed and sleeper sofa.

Also, though we had to leave at intermission, Matt Haimowitz (sp?) played a concert tonight with the MO Symphony and from the one piece he played before the break, it was going to be truly awesome. He is playing another classical concert on Saturday, so you really should go. And we are really looking forward to Time for Three on Monday--three young, shall we call them, alternative, string players will be performing in a chamber event! And Thursday, A la Carte will feature all the Symphony Musicians in chamber pieces and lots of food from their home countries! So much to do, so little time! More after our meeting tomorrow, with love, Lisa

Things I Never Wanted to Learn

I had a teacher in fifth and sixth grade who told me I was a lazy student. I went back to visit my favorite teacher, Mr. Antry for several years and Mrs. Jonas would always say, "oh, it's Lisa, are you still doing only what it takes to get by?" I resented that at the time, but she was right, I was a lazy student--I was a good student and kept straight A's and almost perfect attendance, but I could figure out exactly how much I needed to know and what I could skip to keep my A's. Second semester sophomore year in college, I really screwed up and underestimated the curve--learned my lesson hard! But for the most part, I could figure out that if nuclear half-lives were going to be 10% of the final, as long as I knew everything else, I could skip that! Same with history, I was an engineering major until my last semester senior year so I wouldn't have to take European history, even though I knew I was graduating with a degree in psychology--a loophole only a lazy student like me could figure out! Unfortunately, I fear Pierce inherited that talent...

But if I had to make a list of things I never really wanted to learn, cancer would be at the top of my list. I wanted to be a research doctor so I could find a cure for diabetes and help my brother Tom, but then I realized that medicine is too many years in school. Some other things I never wanted to learn are the the finer points of HVAC and refrigeration--it's amazing what you have to learn in the food business--besides the names and symptoms attached to every food borne illness; the pros and cons of male circumcision, and how to operate a lawn mower--I still can't do that and NOTHING is going to make me. I can't imagine cutting grass will ever save someone's life, so grass cutting is best left to experts as far as I am concerned!

But you know, when you have to learn something to save or better the lives of your kids (like the whole circumcision debate), you do it and you do it as well as you can and as fast as you can. I have never read more things that I so totally don't understand in such a short amount of time. Now I also know enough about cancer and chemo to be dangerous... I think we are ready for a Thursday meeting with our oncologist to go over recommended treatment that we expect to start on Tuesday. I am glad Bo had time to heal, he will still have steristrips on all his surgical sites, but at least he isn't in pain any longer.

So I don't expect many updates before Thursday. I am going to try to get caught up at the store--we are way busier than we are supposed to be in July--that's a great thing, though, better to focus on lasagna sometimes than scary medical statistics I don't understand! Thanks again everyone for everything, Lisa

Extra, Extra

It took me a long time to like Columbia. When we first moved here, I felt like I was the only person who didn't know everyone. I remember what it was like to go to the grocery store and be the only one that didn't know EVERYONE, and all those chatting groups were always clogging up the aisles! I have come to understand, though, that Columbia is a transient community, with the University and the Hospitals, so many people come and go that once you feel established, it is too much work to welcome newcomers. As Wendy told me one day, "you get to know them, really like them, then they leave, and when you have four kids whose friends are always leaving, it just gets too hard!"

But now, after more than 10 years, Columbia is home and a part of me will never leave it, even if we end up somewhere else, someday. And though I knoe I will NEVER get to be a native, I love those "seasoned" guys who can tell you when they finally paved Broadway (that may be an exaggeration, but I am not sure), or that they moved here when Boonville was bigger than Columbia... It is a remarkably supportive place. I have seen it in friends and groups, in starting a business, and now in our fight against cancer. We have spent many hours at Daniel Boone Little League, but I feel bad every year because, of course, it is one of those places you could spend more time, every helping hand matters, but time gets away... Roxanne asked one of the coaches if they could do something to help support and encourage Bo and they went above and beyond. During the post-season, they hold a runs campaign where they seek pledges and raise money for every run scored. This year they are calling it Runs For Bo. We will maintain an account at Boone County Bank, and while we will save it in case the need for experimental treatment becomes a possibility, our desire is to donate all money collected to a worthwhile children's cancer cause. There is no way to exptress gratitude for something this huge, but a huge thanks from the bottom of our hearts to all at DBLL will have to be a start. Oh, and they also made Bo an honorary member of the 12U All-Star Team--he couldn't be happier, but hopefully if all goes well, next year he will BE a 12U All-Star! Thanks so much, Lisa

This is the note Jay received from Mike:

Our coach, Mark, decided last night after our game that he wanted to talk to the team about Bo and have them sign a ball for him. Mark’s post game speech went a little longer than usual and I think some of the parents were wondering what was being said. Mark sent out the following e-mail this morning to let them in on what we were doing.

Mike

Parents, the other coaches and I spent a little extra time with the boys after yesterday’s game…not really all that much time spent talking about the baseball game (other than to applaud their gritty determination not to quit, but instead to fight and put themselves in a position to win…which they did in the 6th inning), but quite a bit of time spent talking about things far more important than runs on a score board… I wanted you to be in the loop as to our conversation…

In our Daniel Boone Little League family, there is a 10 year old player who has recently been diagnosed with a very rare form of cancer. His name is Bo. The story of how he was diagnosed is somewhat miraculous in and of itself. But, irrespective of how he was diagnosed, Bo has cancer. Bo has a rough road ahead of him. Bo needs friends and family to believe in him and to encourage him to fight. Bo will have to muster up the courage to believe in himself in the race he has been asked to run. And, above all, Bo needs the kind of faith that one can only have when believing in something much more important than runs on a score board…

So, as a team we talked about remembering what it means to have a hand in our huddle…today, tomorrow, and many days after the boys are done playing baseball. We talked about preparing ourselves to accept, embrace, and decide to fight when the trials of life come our way…whether it seems to us that those trials are “fair” or “unfair.” We talked about how the game of baseball teaches us how to handle that sort of adversity, but only if we understand what it really means to believe. We talked about Bo and, as a team, we talked about how we could try to be strong for him. We decided that Bo needed to have a hand in our huddle…that he needed to know that he was part of our team and we were part of his fight…that we want him to believe in himself, we want him to know that he has a team of friends and family that support him, and we want him to have faith that there is now, more than ever, all the reason to believe…truly believe. So, we prepared an invitation as only we know how to do…we signed one of our baseballs from the baseball bucket with a message on the ball that we want him to “fight, believe, and know that his pals from DBLL are here for him…” Coach Mike videotaped each of the boys signing on to the ball and voicing words of encouragement for Bo.

I firmly believe that things happen for a reason. Had we won the baseball game yesterday, I don’t think the concept of adversity…real adversity like that which Bo is faced with…would have been a message that would have been received with as much solemnity as it was in our team meeting after the game. For that, I am thankful that the boys had a learning opportunity that was much more important than what happened between the chalk lines yesterday.

Most of you know me pretty well, by now. I am an emotional and competitive son of a gun. When we play the game, I want the boys to lay their heart and passion on the line every time. They know that my expectation for success, on and off the field, has more to do with seeing the passion in their eyes than runs on a score board. Our boys have had more than their fair share of “victories” over the years. For that, I’m happy for them. But that’s not why I’m proud of them. I’m proud of them because I feel that I have known them long enough to know that each of them has a passionate heart for life.

There is not a baseball victory, trophy, or championship banner that I wouldn’t trade for Bo to win his fight for faith. I hope we all feel that way. I hope we will all keep Bo in our prayers. I hope that we will also pray for ourselves, as parents, that we keep perspective in defining the measuring stick of “success” for our sons as they compete as a team and a family on and off the baseball field.

I am, for sure, blessed to have each of you in my life. I am, for sure, blessed to have the opportunity to spend quality time with your sons. And, although I have never met Bo, I am blessed to have had his path cross mine.

Believe!



Mark

This Just In...

Jay and I are lucky to know so many great people, so I wanted to share this from one of Jay's students:

Dear Friends and Family,

I cannot remember if I have shared this with you, but my wife, Becca,
and I will be running the Chicago Marathon in October. We are beginning
our longer runs and slowly building up...this Saturday we will run 10
miles; each weekend increases by one or two miles. Training is
sometimes tedious: not only the physical activity, but also eating lots
of wheat pasta, brown rice, sweet potatoes, chicken, and salmon. While
it sounds good to eat this food once in awhile, everyday ingestion
becomes boring. However, the feeling of accomplishment makes it all
worth the while!

I have pledged to raise money for St. Jude Children's Research Hospital®
. My academic advisor recently told me about a serious medical
emergency involving his youngest son, Bo. Bo has been diagnosed with a
rare form of childhood cancer called Pleuropulmonary Blastoma (PPB). It
is so rare that only 20-30 cases are reported each year worldwide. To
learn more about PPB, please visit: http://www.ppbregistry.org/

Jay has been a great advisor... he has worked endlessly helping me with
my education and preparing me for Ph.D. coursework. Last winter I met Bo
at a local coffee house while reviewing my portfolio work with his dad.
Since hearing about Bo's condition, I have hoped and prayed that his
smile and energy can remain at the level of that day.

Becca and I have decided to dedicate our run to Bo and St. Jude.

St. Jude helps children throughout our country receive life-saving
treatment, regardless of their family's ability to pay. Fundraising is
essential to continuing life-saving research and treatment, which is why
the St. Jude Heroes Charity Running Program was started. It is faster
and easier than ever to support this great cause - you can make a
donation online by simply clicking on the link at the bottom of this
message. Becca and I have set a team goal of $2,000 and a personal goal
of $1,000 each. Whatever you can give will help! We would like to
challenge all of you to help us reach our amount and hopefully go far
beyond the team goal. We truly appreciate your support and will keep
you posted on our progress.

Thank you for your support; you really do make a difference!

http://stj.convio.net/site/TR/SignatureEvent/General?px=1669122&pg=personal&fr_id=3380&et=GCDd9EXzG8NNYoHnVXYkkA..&s_tafId=24242


--Ian

Thanks Ian for dedicating his run to St. Jude's, and coincidentally, his wife Becca is the amazing Sally Bowles in the Summer Rep's Cabaret. As of my update on July 13th, you still have four more chances to see her and Ryan perform this great musical. Their performances of "Money" and "Cabaret" really are theater moments to remember!

Grief for Dummies

I know just enough about a lot things to be dangerous, and while I majored in psychology, I studied the brain side of psychology, not the feelings side. I should probably not write this, but well it didn't stop Dr. Phil! So today, I am going to write about grief. I am not an expert, not even in the experience, but I have a lot of friends who are experts, so all you psychologists, feel free to chime in if you want!

Yesterday I wrote about the five traditional stages of grief: denial, anger, bargaining, depression and acceptance. Modern psychology chooses to look at processes rather than stages, but that's too complicated for dummies and in many ways not so different for my purposes, so we'll stick with the Kubler-Ross model! We also know that people do not go through these stages in any particular order, that some people don't go through all of them, and you can be in multiple stages at any given time.

So, in my short experience, I have come to realize that every grief experience is different for every person--it's like trying to bring a side dish to a potluck without knowing the main course. Mediterranean bean salad is great with grilled chicken, but not if the host planned a honey glaze and a side of mango chutney... And I make great cheesecake but if the featured dinner is fettucine alfredo with caesar salad and garlic bread, something fruity, or even chocolate would be much more appropriate. And then when I show up to the party with my cheesy potato casserole and the hostess laughs and say that at the last minute she decided against meatloaf and is making Hunan shrimp, my perfectly good offering is now useless. And so matching grief is very complicated. Many marriages flounder in the face of grief, and it makes sense when you figure that if I spend most of my time between acceptance and denial and Jay hovers between depression and anger, little problems start to arise--even without your ever being aware.

If it were more clear, I would just stick a post-it on my forehead--"beware anger," or "calm acceptance," but I don't even know from one minute to the next where I am or how any person or comment will be received--I feel like the land under California, broken and unstable. And this is where you start to understand why so many books tell you that when you face childhood cancer, relationship problems are a reality. People you were close to fall away and people you never knew become your best friends. Relationships are complicated anyway, but add the complexity of great challenges and grief and things are magnified 1000 times. Some people will expect more from people who are close to them, but of course they will also grieve whether it is for the child, or for life the way it used to be before things got weird and your little problem became the center of the universe. Some people are uncomfortable with illness and loss, some are terrified of cancer, and all those fears and needs and feelings get mixed up like garlic and vanilla.

So what does that mean? Well for me, and having now read probably close to 100 blogs on cancer and the like, I think others express the same things, so here are my first few hints for helping people you love through grief:

1. Coordinate help with the family. Do offer help, send letters, cards, and even phone, support is good, pushy is not. People in denial will not admit to needing help and can resent the kind that is overly intrusive. People who are angry may not appreciate the kind or level of help you have to offer. If you mean it, put the offer out there, but don't be surprised, hurt or otherwise offended if they never take you up on it. Every expression of care makes every day brighter, even if no help is needed. Also, some people, self included, are never comfortable accepting help, and in the face of a life-changing event, they may be even more steadfast, that would be me, or become very open to help--ask, it can't hurt "Is there anything I can do?" is never a bad question. "I am coming to stay at your house for a week to get your medical files in order" is probably not the best offer. I read in one blog about a woman whose well-meaning friend sent someone to cut her grass and they mowed down her whole flower garden that was supposed to offer her comfort when the going got tough...

2. Advice is not always good. "It helps to talk about it," "my mother's cousin's sister's friend is the best cardiologist in Finland, you HAVE TO talk to him," "You need to let people help," "he HAS to eat more vegetables" all seem sensible and helpful but from the wrong person to the wrong person at the absolute worst time can be a deal breaker--the end of a perfectly good relationship. People under stress are not sane. When your friend wonders aloud about alternatives to valve replacement or if nutrition matters, or says they want to talk, then be there and give and offer to help find answers, but otherwise follow their lead.

3. Be aware of your own needs, then the needs of others. Grief is complicated in small quarters. When parents and children and siblings all collide in different stages of grief, things get messy. Take care to save the emotional energy you need for the people that rely on you and hope others understand--it's like on a plane, first your own mask, then others, and you can't save everyone. For me personally, I have to make myself stable, then take care of Bo and Pierce and Jay, in that order. Everyone else is a distant third. While I love both our families and all our friends, at the end of the day, there is sometimes little left, and all those other stages of grief that I can't share with Bo and Pierce, and sometimes not Jay, are at risk of spilling out on innocent bystanders--that anger, depression and denial need a place for expression. Lately I am very bad company, and I often don't enjoy being around people. Forgive me and others like me, I don't even have enough left for pretense--simple hellos, good byes, and how are yous take a back seat sometimes. But grief doesn't last forever, so forgive, and eventually forget, and remain an understanding presence so that relationships can be normal again one day, and that day might even be tomorrow, but not Monday, and Tuesday isn't looking good either, it just goes one day, and sometimes one minute at a time, and like Ian and his wife know, a marathon is not simply a long steady run. Marathon runners know that every single one of those miles is different, some are easy, some are downright excruciating, and so it goes with all the big challenges life throws us sometimes.

Anyway, that is my highly inappropriate, very uneducated primer on grief and helping people you love, or covertly, helping me, you know "I have a friend..." Anyway, that's all for now, I think my session is over, Lisa

Isn't it Ironic?

I did not have verbal children--when they were little that is, and I was too ignorant to be concerned! One of my favorite stories about Pierce was that one day I was watching his friend Kyra for a couple hours, the first time I had been alone with Pierce and a peer. The kids were both on swings, right next to eachother, and Kyra said "Lisa, the sun is in my eyes, would you please go inside and get my sunglasses?" And as I was starting to say "Sure," and go in the house, Pierce said "Ga ca me!" Well I knew that meant "I would like my sunglasses also," but surely no one else would have! As I went inside to fetch the desired lenses, I pondered the lack of verbal ability in my child, but really, what could I do? When Bo was the same age, he was just as non-verbal, but our parent educator was way more concerned than the first one had been. She worried that he had hearing issues--it turns out he did have a problem with intermitent hearing deficiencies when he had asymptomatic ear infections, but it took us about 4 years to figure it out! But really, he just wasn't verbal either, mostly he made car sounds, "brrrrrrrr, crash, mmmmmmmmm..." Not many words. So when he did speak, it was usually with meaning.

So isn't it ironic, that from a very young age, Bo took to walking up to complete strangers and telling them in his deep and gruff little voice that "if you smoke, you will die." I am not sure how or why this became important to him, but it did. In the same way that after many conversations about why one must wear "sunscream," on the day the news was filled with stories about Ronald Reagan's daughter succumbing to skin cancer, a little voice emanated from the back seat of my car saying "She did not wear her sunscream." And so now, isn't it ironic that the experts have voted and the final diagnosis is carcinosarcoma without excluding synovial sarcoma. Carcinosarcoma is a VERY rare lung malignancy, less than 200 cases in all the history of the world, mostly in old men who have smoked for a lifetime and 90% of them die of the disease. No one knows how or if it can be treated. Some have opinions, but there are no studies, there is no evidence based research, nothing, nada, zero, zip, nil.

If this experience has been a roller coaster ride so far, I feel like today we came down the BIG hill and crashed. I have every hope in the world, but as Amy's story shows, hope and faith are not what it takes. Amy had BEAUTIFUL faith and still her life was stopped in its prime. There is not enough faith in the world to change your destiny, but it sure would be nice if we could just know that so we can accept it and live with dignity. But we never really get that gift. It is choosing to live our lives with grace and strength even in the face of hardship that separates the strong from the weak, and so we will be strong, no matter what the fates bring. We will be strong for Bo so he can give it the best fight he has. But tonight I will cry.

And the other irony is that today, for the first time, I felt like I was in a good place. When I first started this blog, and for a good week or two after, I was in denial. You can read anywhere about the stages of grief, and denial is the first. But denial doesn't necessarily look like you think it does. It is not a delusional denial--it is a state where you close you psyche to the emotional payment of acceptance. When you are in denial you can't talk about it because that means facing it, and facing it means opening yourself to the other stages of grief, anger, bargaining, depression and acceptance--all of which were impossible for me at the time. I am not the kind of person that can be angry or bargain, I can only deny, be depressed, or accept. I have a child at stake, so depression is not an option either, and I was not ready for acceptance. Today I thought I was ready, but I was wrong. So after I cry, long and hard, I will go back to denial because that is the only way I can make it through the day with a smile for Bo. With love, Lisa

Life Goes On

In the shadow of childhood cancer, how does life go on? I talked in a previous post about how successful cancer families are able to maintain a normal life in spite of the disease. But, in a family with a small business, what is a normal life?

Three years ago, after spending three years trying to buy existing businesses, we decided to take the leap and buy a franchise in Texas-based Super Suppers run out of the Culinary School of Fort Worth. Except for the company, building a business has been a tremendous experience. Going out on a limb, finding a landlord, a banker, suppliers, and the support of everyone else you need to build a business has been exciting and rewarding. However, it has also been incredibly time consuming and fighting with corporate has been emotionally draining.

The way the business was supposed to work, I would set up a kitchen where people would make appointments and come in to assemble a month's worth of meals that they would take home, freeze, cook, then come back the following month. In an ideal world, they would also choose to do this in organized groups, so once I found 12 or so of these groups of 12 women, I would have a thriving little business. Well, it only took six months to realize that maybe this works in DFW, but it doesn't fly in mid-MO! Unfortunately, though, when you buy into a franchise, you are not free to decide what works and what doesn't--especially when your franchise is run by a narcissistic megalomaniac who wrote a leadership book about his prowess AFTER he bankrupted a company and believes that if you are not successful, you are not praying hard enough. Yes, hindsight is 20/20 and I should have known better, but the idea sounded good, I respected their recipe development experience and thought that most people actually learn from failure and try not to make the same mistake twice. I was wrong, but I love my business. We did adapt and we did change things--I get in a LOT of trouble, but we grew a great clientele of people who came to depend on us and I was determined to make this work, and we have. As we approach the middle of year three, I feel like we are finally on the road to growth.

But then the wind changed. Truly making this business a success would involve, for me, an expensive legal battle to get out of my franchise and continued effort to build the business. In light of Bo's situation, I no longer have that time. If worse comes to horrible, I don't want spend this next year in a legal battle with Super Suppers, I already wasted a lot of time over three years on them, and this one is too precious. So, I sent a vague note to my customers that I have other pressing matters to tend to and we may have to close the store, and one of the things I got back was this note from a customer:

My name is Jenna. I doubt that you remember me but I’ve seen you a few times when I’ve come to Super Suppers. My husband loves the chicken lasagna and I love just about anything they can cook when I’m gone.

Stacy and I work together at Mizzou and she has always said nice things about you and commented several times on what a neat person she thinks you are.

So last week I got your mass email about the Supper Club and I came down to Columbia to pick up our month’s supplies and I spoke with a really nice girl who was working that day and she mentioned that your son had been diagnosed with cancer. You’ve been in my thoughts since. Today I read your blog and it touched my heart and has prompted this email which I hope you don’t find too strange.

I am 33 (gosh, how is that possible?), married with a 10 year old daughter and I was a police officer until I decided to go back to school 4 years ago. In December I will graduate with my law degree and an MBA. In the mean time I work as a graduate assistant, with Stacy, in the Office of Judicial Services at Mizzou. I love to cook and have taken classes at the Culinary Institute in New York City and went on a culinary tour of Paris in December. I was a front of the house manager in a restaurant in Lawrence, Kansas when I was in undergrad and did things like scheduling and ordering and that type of thing. I’ve done kitchen prep work more times than I can count and I’ve always enjoyed it. I have a basic understanding of HTML code, I could not create a website from scratch but can manage updates and basic changes. I think that covers the basics. I’m telling you all of this because I’d like to offer to work for you every other Saturday, if you are interested in some free labor. I’ve talked it over with my husband and he is on board. I’d not want to be paid, we could treat it more like a volunteer internship. I would be available for the entire day (10am-3pm)...

I just thought that you might need a little help and I might be able to do this small thing to make it just a little easier for you...

Good Luck on Tuesday! Good thoughts!

I also received lots of other notes and phone calls from customers, some I hardly know, and my vendors, neighbors, etc. Are people just amazing, or what? But it just goes to show that what comes around goes around and I do believe in karma. I may not be praying hard enough to make money, but I help people have better lives and they appreciate it, and they value our service. At the end of the day, that's what counts.

But this is for all of you that have asked what I plan to do with the business. I don't really know. I love the business and it is just on the verge of profitability. I have worked hard to create a solid foundation. What I realized when we found out about Bo was that this may work out well. If I sell the business asets, someone else can pick up where I left off, without the ball and chain that is Super Suppers, and build a truly great business for Columbia. I have everything in place to succeed, all I needed was to ditch Super Suppers, and now someone else can, without the lawyers or the emotional energy, and I can take care of my little boy and plan my next adventure.

So if anyone knows anyone who wants to make a small investment in a little business venture in Columbia, Super Suppers is just waiting to become Columbia's Kitchen under new management! Thanks to Jenna and all my great customers, and most of all my staff, Christy, Rachel, Tommie, Lauren, Kerry and Chris who have been so thoughtful and supportive every step of the way! Truly, Lisa

The Port is Ready

Makes you think of a cruise, doesn't it? In only a short hour in surgery, Dr. Ramachandran placed a port under Bo's right clavicle. He really is wonderful--followed the natural crease in his skin so as to leave as small a scar a possible. If you have no cancer background, a port is a little plastic device inserted under the skin with a tube that goes straight to the jugular and down near the heart. Freaky, really. Chemo drugs are often vessicants which means that they burn tissue and thus, have to be administered in a vein with enough blood flow to prevent damage. So the port is accessed with a needle that goes through the skin into a plastic disc that feeds into the tube. They can also draw blood that way and administer other medications, or IV fluids--very convenient, really. I imagine that as humans evolve we may naturally grow these--no one would ever need an IV inserted into a tiny little hand vein again.

Intended to write a longer post, but Bo didn't sleep well last night, and that on top of getting up at 4:00 makes for a long day. So I'll put the rest off until tomorrow. Bo is now in bed. He looks a little like he got attacked by a vampire and is walking a little like Frankenstein since he is favoring both arms, now, but all things considered, he is doing well and his spirits are good--he thinks they should have made the tube light up--that's Bo! Good night all, Lisa

Cancer Humor

The other day I spent a good deal of time perusing cancer t-shirts and hats. I have come to learn that almost every cancer has a color--pink is not the be all end all. You can wear gray for your uncle, light blue for your dad, and virtually every other color in the rainbow for someone. I had no idea. I also had no idea that the battle for a breast cancer cure is now an effort to save "second base." I didn't even get it, but of course Jay got it as soon as I told him... Speaking of which men can now proudly wear shirts that say "I'm a breast man," or "save the boobies." What is the world coming to? So of course we found lots of "Cancer Sucks" shirts. And many that said something to the tune of "I kicked cancer's a@@, do you want to be next?" and the similar "I already beat cancer, I am not afraid of you." Bo's favorites were "My bald head is cuter than your bad haircut" and "I have chemo brain, what's your excuse?" My favorite, hands down was "If I had known how much work it would be, I never would've gotten cancer."

It is a lot of work. Yesterday I spent ALL DAY shopping for a pair of slippers. You can get ladies and girls slippers in every size shape, color and fuzz level imaginable. And you can get a decent selection of respectable men's slippers, but no one makes slippers for boys. I ran into James and Jenny at the evil place (the one that begins with a W that I only shop at when I am desperate) and James suggested I try Bass Pro. Well that may be an even more evil place to someone like me--I am pretty sure there are no stores I like less, but I checked online and they have a pair--in camo--ugh, I am not a lover of all things camo. But I may end up there if things get desperate.

So speaking of things and getting back to the humor topic. What do you say when your oncologist calls and tells you there has been a "little hiccup" in your case? Seriously, I started to make jokes in my head. It's better than your surgeon calling to say he HAS the hiccups--"oh, you're in for a vasectomy, hiccup, I'll get right on that..." Yeah, uhhuh, is hiccup a medical term? Well that was the call we got today. It seems Bo does not have PPB after all. His tumor is lacking epithelial cells, one of the true landmarks of PPB. So, the team is confounded and they are not sure what he has. It is possible he has adult pulmonary blastoma, or some form of sarcoma. Whatever he has, if we thought PPB was rare, it at least has a "club." Now he is in a "no one has ever seen this before" club of one! In a way it's a relief. We have not spoken about the fact that PPB has a not so good prognosis, so perhaps we can hope for a "better" cancer? But it is also scary and amazing and just makes the whole experience that much more surreal.

So, I am tired and I need to keep this short. We will still go to the hospital tomorrow to have a port placed. They are still convinced that no matter what it turns out to be, he will need chemo, and the surgeon says that in an ideal world, he would have the port placed and wait a week or two to start chemo, so this is good for his little body and we will get to come home tomorrow, most likely. And in a week or so, we should get pathology reports back from all the third, fourth and fifth opinions the oncologists and pathologists are seeking. It's a crazy ride, that's for sure--in the amusement park of life, this attraction gets very low scores! In my next post I will tell you about Super Suppers because things have gotten interesting lately and the beautiful humanity of people just amazes me! Have a great week, we will let you know how things go at the hospital as soon as we can. Truly, Lisa

Preparing for Cancer

How does one go about preparing for cancer treatment? I guess in an ideal world, we would have started a couple months ago. We would have deep cleaned the house, finished all the landscaping we had planned, replaced the carpeting (We were waiting for Charlie to outgrow his puppy phase, does that ever happen?), and what the hell, maybe we would have had a party, like an engagement party, where you get to tell everyone all about your plans. Then we would have been nice and orderly about the gifts, also. Bo is planning to write some thank you cards today, but I have to admit, we may not do a great job of this--we received so many gifts and cards while we were still in shock that a few times I never bothered to inquire who they were from, and I am positive my mailing lists are not updated. So please forgive us if we miss anyone, or if it takes a long time, we promise to do our best--every single good thought and deed means the world to us, truly.

I read an article yesterday, well, I probably read 12 or so, but two stood out. One is that the majority of mothers who live through childhood cancer show signs of PTSD, some forever. I already feel the possibility. As a trained planner, and one that thrives on stress, even I am confounded. How does one plan the unknowable, and the unthinkable. I worked an assignment with GAO related to military preparedness. It was a short job because while we were prepared to criticize them for not taking adequate steps, their response was "there is no way to prepare that possibility, and if it occurs, there is only one out." When dealing with war, we all know what that means--there is a reason we have nuclear capability... So this is our last day to prepare. We made a notebook to record everything we might need, and Bo and I will go shopping for, probably a diaper bag so that I can carry the notebook, a thermometer, his numbing cream so that he is always ready for port access, even in an emergency, an extra toothbrush, and other stuff like that. And we will join the ranks of overprepared hypervigilant cancer families.

The other article that stuck was one about the psychology of families that succeed in treatment. They have five defining characteristics: 1) a philosophy that lets them get past the "why," 2)a strong social support network, 3) honesty in communication, especially with the child, 4) sibling support, and 5) ability to maintain a normal life in spite of the disease. So I took these things to heart. We never really asked "why," we are not the kind of people who dwell on the unfairness in the world, as I've said countless times, we can only play the hand we're dealt, there is no way to change it. And three four and five have been a given. It has been a little hard to convince others how important it is that we maintain a normal life--in my normal household we would not have a PlayStation. However, that gets to point 2, and in that, we are SO lucky.

And that brings me back to the thank yous and the preparation. We owe so much to so many without whom this journey would be unbearable and terribly frightening. Our friends at the hospital, Nancy, Mike, Dr. Kristin and Paul, Ken, Christie, and I know there are a few others I have omitted. Our friends with knowledge and experience, Bonnie and family, Dr. Steve, Ryan, Mike, Mark, Nancy, Fabiola and family, Bonnie, and the countless others who have gone out of their way to help make sense of the experience. Lara, Bill and family, Mike, Roxanne and family, Mark, Linda and Emerson, Dierek and Barbara, Dr. Teresa and Nancy, Joe and Meredith, Paula and Rick, Deb, George who has special connections to St. Rita, Catherine and the pink nuns, Dwayne and Leah and family, Bo's friend Melissa and family, all the others who have given their own precious time to lighten the load. And of course, Pastor Paul and our church, St. Andrews, and our families. And again, I apologize to anyone I didn't mention specifically!

So, fourth of July was awesome. The picnic at Mojos was fun, tasty and all around perfect. The music was awesome, the Carolina Chocolate Drops are the best, always, but for a July Fourth celebration at Forest Rose park, unbeatable! We watched the fireworks from the absolute BEST spot ever, and next year we plan to be there with a big BBQ, so anyone who wants to join is invited, that way we can secure a BIG spot and plan to stay until the traffic clears. We will be through the cancer mess by then, so it will be fun! West Side Story at Arrow Rock was good, the talent is superb, though the use of canned music does detract for this show, and Maria had a voice that really needed to NOT be amplified--the sound system is not equal to her amazing voice! Today is Cabaret, which runs through next week, so catch it if you can! Then Monday both boys will go to summer school in our attempt to maintain a normal life, and Bo will start treatment on Tuesday.

Thanks again everyone, for everything, every prayer, every thought is appreciated. It is truly priceless to know that if we ever had a need, there are so many people we can call on for help. With love, Lisa

Amy's Turn

http://www.wilhoite.blogspot.com/

I told you in my very first post that one day I would tell you about Amy, and so today is all about Amy. First, for those of you who don't know, I run a Super Suppers, it is a place where people get food, I'll tell you more about that soon, but for now, you just need to know that we make food. One day I received a call from a very nice woman who wanted to purchase meals--but there was a huge catch. She was from far away and wanted to give them anonymously, she also wanted them to be delivered, but she did not know the person's telephone number or address. Apparently Amy was a very close friend of a family member and she had just been diagnosed with AML (you can read about it on her blog). She was a young wife and a new Mom, and the mystery person wanted to make sure that they had some help getting through a difficult time. She was explicit that she wanted this to be no burden to them, so whatever extra she needed to pay was absolutely all right (of course I didn't charge her extra, I am so not good at making money and I felt privileged to be a part of her benevolence). I told her I would need a couple hours, but I would arrange something.

The only clue I had was that Brandon worked at the University. Brenda, one of the assistants in Jay's Department knows her way around everything, so she was able to ascertain the Department he worked in, and this being a small town, we were able to figure out that I know his boss. A quick call to John got a return call from Brandon and I was able to visit their home, deliver a lovely Edible Arrangement and tell them that this person wanted to be sure that they didn't have to worry about food until the ordeal was over, and I was instructed to do anything needed to make it work. They were wonderful and gracious and her blog showed up in my Google Alerts the very next day.

One of the sermons I remember most was one of Pastor Julia's about "Beautiful People." And by that she meant people of beautiful faith. I never knew why the sermon stuck with me, I certainly wasn't a beautiful people, and outside of people like my pastor's had never known anyone like that, but the very second I looked at Amy's blog, I realized that if PJ's BP's have an A-List, Amy would be at the very top--the Paris Hilton of faith (eeewwww, can you even make that analogy???)! Her account of her journey was honest and inspiring, but more than a little painful. She is my hero. In her blog, I realized that there are a few people put on the planet to be role models, real people who live their normal daily lives and make positive changes everywhere they go--that's what Jesus was most of his life, whether his peers or we believe in the bigger picture or not, even historians believe that a man named Jesus of Nazareth walked the planet and did good deeds. That's all I've ever wanted, just to make a positive difference, and that Amy could do it so perfectly under such incredible duress still drives me every day to be just a little bit better.

And so everyone should read Amy's blog. And for those of you who have told me you have been unwilling to post here because I don't know you, or you don't have anything important to say, or whatever, check out the posts on Amy's blog and know that it doesn't matter, every ounce of support and encouragement makes the days brighter, and so I will end with my life motto, from the genius of the Beatles, remember that "in the end, the love you take is equal to the love you make." Have a great holiday weekend, Lisa

The Calm Before the Storm

Bo starts chemo on Tuesday, so this is our last normal weekend before we become a real "cancer family." They say we will get so used to the new normal that it will be a huge adjustment to going back to living like normal people. I guess we'll find out in 36 weeks. But this weekend is Fourth of July, I guess I must have some odd foresight because I generally don't close more than one day for holidays, but this year I just closed Friday and Saturday. So I think tomorrow, we are going to see the Carolina Chocolate Drops. If you ever get a chance to see them, go, they are SUPER talented, and fun and Bo just loves them. Then on Saturday we will drive out to Arrow Rock and see West Side Story. And on Sunday, if the kids are still up to it, we will go see Cabaret at MUs Summer Rep. For all our Columbia friends, our very own Ryan McNeil is playing the emcee part made famous by Joel Grey. Ryan is also SUPER talented and a great role model for Bo since we were an active part of Columbia Entertainment Company when Ryan was finishing high school and found out he had leukemia. We went at least twice to see him play the Teen Angel in CEC's production of Grease, and even bald, he was able to bring down the house, so do go if you have a chance. Also for our Columbia friends, Jay's parents are looking for a furnished or partially furnished abode so they can be here for a good part of our adventure, so if anyone knows of anything affordable, please let us know!

Bo's PET scan was clear, though we are still waiting for confirmation that what he has is actually PPB. If it is not, it is still a very related sarcoma and the chemo regimen will be the same, though if I talked about it before, it is slightly different due to a little problem with the PPB files. It is 12 three-week cycles, with the first seven weeks VERY intense. He will go in on Tuesday and have his portacath placed in a simple surgical procedure, then go straight to clinic. We picked Tuesday as his treatment day so that it will interfere least with violin and orchestra which is on Monday. On weeks 1, 4, and 7, he will plan to be there at least one, maybe two nights since those are his doxorubicin days--one of the most terrible chemo agents as far as vomiting goes--commonly called the red medicine, and the nurse said some kids start to hurl as soon as they see it... The first seven weeks he will go to clinic every week for treatment, and probably at least one other time to check his counts. Then after week seven he will have two weeks after every treatment cycle. There will be no radiation since the PET scan was clear, but he will have chest x-rays, MRI head scans and CAT scans throughout treament and another PET at the end.

Anyway, I gotta get ready for work. I worked the first full day in over two weeks yesterday. My girls have been awesome, though apparently we have angered a few customers since it is so hard to keep up with all the new recipes and which need rice, or pasta, or buns, not to mention just finding them! But I told them not to worry, if we lose customers over this, it will not be the end of the world, and as long as they are doing the best they can, which I think they are, that is all we can ever do. And I told them that it is an important lesson for them also, people don't generally screw up on purpose, so a little forgiveness goes a long way. Apparently it did not go far for me as I screamed at the Sprint customer service guy--Note to self, work harder on the patience thing... Have a great day and remember just once before you lose your cool or have a bad thought about someone that does something less than intelligent or considerate, imagine what heavy bags they might be carrying and give them just a little break. Truly, Lisa

Tests and More Tests

So here we are three weeks, countless tests, one biopsy and one surgery later, with still so much to do. We appreciate the overwhelming support that we have gotten from everyone, but at the same time, it is very overwhelming. Our home is not ready for visitors on a good day, lately it probably qualifies as a Superfund site--literally, with all the radioactive testing agents Bo has had to endure, among the trash, the dog hair and the gifts, there must be more than trace elements of yucky stuff...

Everyone wants to know how they can help, but as others who have been through the journey tell us, this is a marathon, not a sprint, and in this preparation stage, there is little help we need. We sure don't need food, considering what I do for a living and the fact that Bo is seldom allowed to eat, it would be just wrong to have too much food in the house. Visitors are wonderful, but they take us away frm waht we really need which is time. We need time to read and research, time to process and absorb the vast amount of information that has gotten thrown at us in such a short amount of time. MRIs, CAT scans, bone scans, PET scans, then all the chemotherapy drugs, their side effects and all the things to remember about his care. We so appreciate Steve and Mark who help us wade through the decisions, the terms that far exceed my one semester of organic chemistry, and others who have sent us valuable studies and information on chemo roadmaps.

We are still waiting for a last test, a PET scan, and of course the machine is down--who knows how long Bo will have to go without food... Then we have to go see if our ENT can cauterize some blood vessels in his nose to eliminate what are likely to be frequent trips to the hospital during his normal bloody nose season. Also, we still don't have a fully confirmed diagnosis. The pathology reports and samples have not been received by the registry yet. But, chemo starts on Tuesday, and it will be a pretty rough seven weeks, followed by 30 more weeks of one on, two off.

Just a short update, since things are so crazy. Jay and I are both trying to get caught up at work, trying to take care of normal things, like getting the dogs to the vet and the groomer, and understand the pros and cons of I vs. C. and whether or not to use cis-platinum. I've been able to sleep lately, so I have to fit blogging in there, too. Thanks again to everyone for all the support, with love, Lisa