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
Wednesday, July 30, 2008
Monday, July 28, 2008
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
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
Sunday, July 27, 2008
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
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
Saturday, July 26, 2008
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.
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.
Friday, July 25, 2008
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
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
Monday, July 21, 2008
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
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
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
Subscribe to:
Posts (Atom)
Posts
