After countless tests that required many pokes, Bo was left with no usable veins and some very cool pictures of his skeleton. They confirmed the worst but also eliminated some of the terrible. While the tumor was relatively small, about the size of a golf ball, it touched the wall of his chest and his heart, in the lower right lobe of his lung. The tests confirmed that there was no heart or bone involvement, so surgery could likely be done laparoscopically. The surgery was scheduled, and the tumor removed, but they found a second tumor that was in a very dicey place--under the phrenic nerve and on top of the aorta, it had taken over a node there and Dr. Ramachandran called for a consult because he did not want to risk a mistake and was worried it might require a full thorocatomy that he did not want to do at this time. The tumor was not highly adherant so they managed to remove both with generous margins and did not see any additional tumors.
However, the two tumors confirmed the cancer diagnosis, though not the type, and the most logical type, PPB often takes a direct walk to the brain. So we waited another day before we could get a pathology confirmation and a brain scan. The pathology report confirmed Type II pleuropulmonary blastoma, but cleared him of any brain involvement--for now. He still has to undergo a PET scan which will more conclusively show any additional tissue involvement. Then he will start chemo. He will go in on a Monday, have his central line portacath placed by Dr. Ram in a simple surgical procedure then go right to clinic for his first treatment. We don't have an exact clinic schedule yet, but he will be given six drugs (the recommended PPB registry regimen, so you can see it there) over five weeks, with three weeks to heal, for eight cycles, so if all goes well, 48 weeks, but probably more than a year since cycles do not always begin and end on time. We will do treatment here. We are getting second opinions through the registry--our surgeon knows Dr. Dehner, the pathologist in St. Louis, and Dr. Gruner has been consulting with Dr. Priest in St. Paul.
We have no idea how well Bo will do in treatment, but we do know that his treatment is intense. Mark, one of our friends who happened to be there on the day Dr. Gruner came by to deliver his treatment regimen, is a cancer researcher and he said he was pretty certain he had never seen so many drugs thrown at a cancer, but he has no reason to question the recommendation, it just confirms how scary this cancer can be. Dr. Gruner said a lot of her kids do relatively well in chemo, they take treatment, go play, throw up, and go play again. Some never show any sign or discomfort and some are knocked flat for the whole time. We have every reason to think that Bo will do relatively well, but will probably have a few bad weeks. His principal has been wonderful, both she and his last teacher came to visit in the hospital and has vowed to help us do whatever she can to help Bo through the next school year.
And so that's all we know for now. We are still waiting for a pathology report from the registry and staging won't be complete until the PET scan which we can't do until he heals from his surgery. Neither of those things are likely to change anything but will give a better idea of how he progresses through treatment. The sun is coming up, so I have to get started--we are going to see Pirates of Penzance today, I think, the weeks went by so fast, I am not sure we got our tickets arranged, but that's the plan, anyway! With love, Lisa
Sunday, June 29, 2008
The Name
Only a few days before this adventure began, I was driving around town with BO alone. I remember getting back to the store and telling Christy how amazing and how amazingly different my two kids are. Their true personalities only come out when they are not together. If you find yourself alone in a car with Pierce, he will ask you a MILLION questions and you will be able to answer approximately three. When he was about three, he started with the electricity questions--what are those things on the wooden things, and where do they go and what do they do and how do they do it and why and why don't they use something else. Bo's biggest fear is kidnappers and we always tell him that as long as he is with Pierce, he is safe because as soon as someone picks them up, Pierce only has to be Piercey, meaning ask a million questions, and they will drop them back off in about ten minutes! But when you are alone with Bo, his sensitive existential side comes out. That day, he was so happy and he was marveling at how right now he is a kid, but one day he is going to be a grown up, and will it feel different, and then he will have kids, but will he still feel like a kid? He was so beautiful and so thoughtful and so happy, and every day since then I can't stop replaying that conversation. At first it made me happy, and now it makes me sad in a way I could never have imagined, and I can't help but wonder how much more sad a person can possibly be.
And so the name of the blog. Lara understood immediately. It was pronounced thatamuch, one word. A Bo-ism most often used when he got the point of domestic semi-independence. "Thatamuch kepuch, mama?" was the most common usage, as Bo used to like ketchup on everything. But it also meant that's enough, as in "thatamuch PIERCE" meaning "stop whatever you are doing to me!" And as I lie in bed in the hospital on the night I started this blog, before we knew the whole travel plan, all I could think was "please god, thatamuch."
But we can do this, I said in my last post that I believe, and we have told Bo repeatedly, that god only picks special people to face the biggest challenges because he knows they can handle it. He picked Johnny and his poor mother, he picked Mike so that he can be a role model for Bo, and so, there is a reason he picked Bo, and even though we may never know why, he picked us. So I will keep asking "thatamuch" and hoping we get more dessert and fewer lima beans, but we will make the best of what we have and make all the happiness we can while we can. With love, Lisa
And so the name of the blog. Lara understood immediately. It was pronounced thatamuch, one word. A Bo-ism most often used when he got the point of domestic semi-independence. "Thatamuch kepuch, mama?" was the most common usage, as Bo used to like ketchup on everything. But it also meant that's enough, as in "thatamuch PIERCE" meaning "stop whatever you are doing to me!" And as I lie in bed in the hospital on the night I started this blog, before we knew the whole travel plan, all I could think was "please god, thatamuch."
But we can do this, I said in my last post that I believe, and we have told Bo repeatedly, that god only picks special people to face the biggest challenges because he knows they can handle it. He picked Johnny and his poor mother, he picked Mike so that he can be a role model for Bo, and so, there is a reason he picked Bo, and even though we may never know why, he picked us. So I will keep asking "thatamuch" and hoping we get more dessert and fewer lima beans, but we will make the best of what we have and make all the happiness we can while we can. With love, Lisa
Saturday, June 28, 2008
The Backstory
It all begins on June 5, 2008 with Johnny Jackson--the little boy in South Carolina who died of dry drowning. Jay and I both read the article, two trained lifeguards who both spent their lives in and around the water, and we had never heard of dry drowning. How scary is it that your child can walk home from the pool, go to sleep, and never wake up? I felt so sad for his Mom, she took him swimming for the first time--how exciting and happy that must that have been for him--but then he was gone.
So on Tuesday, June 10, our neighbor, Kerry, takes Bo to the pool--Pierce was at a friend's house. I'll eventually tell you more about Kerry, but without Kerry (and Kerry's whole family), I am not sure where my kids would be--she's a better disciplinarian than I am, and since she was 7 has always been there when I need her to help me out--the perfect mother's helper. And now she's HOT to boot, my boys are pretty lucky, but they don't know it yet! Anyway, that is only slightly related to the story. But it is related because at the pool there is this weird incident where the staff are working on the pool filtration system and Bo goes to the bottom of the dive pool to retrieve some dive sticks. The jets restart just as he makes it to the ladder, where Kerry is sitting, to get out. Huge bubbles of air, and probably chlorine gas that backed up in the system emerge from the pool to about two feet just as BO takes a breath. Only Kerry and Bo saw the bubbles. Kerry said she was not sure why the guard didn't see them since Bo was the only one in the pool, but I figured it was because Bo was not in any danger, and he was probably watching Kerry! After 15 minutes of coughing and sputtering, Kerry called me, and I called back to the pool to have Julie check on him. Julie is one of the club managers and someone who also has known Bo his whole life--she may have changed more of his diapers than I did, but that's another story for another day, also! Julie said he was fine (and he really was), but he was still having a hard time breathing, and not having very much fun, so Kerry brought him back to my store.
Dry drowning still in the back of my mind, watching my kid cough and sputter, throat burning from the chlorine gas, but I know that chlorine is not dangerous in a situation like that, I do what any respectable overprotective Mom with good health insurance would do--get ready to take him to the doctor! But our doctor is on vacation, so I call Jay, and like any self-respecting overprotective Dad with a heightened sense of danger from all those crazy movies guys like to watch tells me to take him to the ER at University because they have a trauma unit! Seriously I said, he is walking and talking, we don't need a trauma unit. And we ALWAYS go to Boone, we are regulars, we know the nurses, a few of the doctors--our old family doctor even works there sometimes, and because of many incidents surrounding Bo's birth, I was determined never to go back to University Hospital, but I set out, anyway. When I get there, though, there is all this construction and I don't even know where the ER is, so I go to Urgent Care, I know where that is--because kids ALWAYS get ear infections on Friday night! Just as I walk in, Jay calls me and says he is at the ER and where am I? After a short negative exchange, with me thinking "gosh, it's like he called in the Army, and now Bo seems totally fine--" you know how that goes, as soon as you get to the doctor the symptoms disappear... Well we turn around, find the ER, run into some friends on the way in--small towns are like that, and I was way more worried about Judy than Bo at this point, but we get checked, anyway, and there is no one else waiting so we don't even need to wait. How crazy is that, no waiting in the ER? If we had had to wait, even 15 minutes, I am sure Jay and I both would have decided he didn't need to be there.
The doctor checked him out, said he was fine, explained dry drowning and what to look for (this really needs to be a part of lifeguard training, and even general CPR, it only takes a minute to explain), and said that just to be positive, he was going to do a chest x-ray. At this point, even Jay knew he was going to be fine and I convinced him that we didn't both need to wasting time (remember, I am not in favor of wasting time!) so he should go back to work. We waited a LONG time for the x-ray results, and when the ER doctor came back into the exam room, he asked me if Bo had pneumonia recently, what? Outside the fateful flu incident, Bo has NEVER been sick. But the doctor said there was an unusual spot on his lung so he called for a consult and that was what was taking so long. The consulting doctor wanted a CAT scan, so three more hours after I sent Jay home, we were sent away knowing that we would be contacted by a whole bevy of doctors in the next couple days.
And we were, and we met, and at first, I think we all believed it was nothing-- inflammatory pseudotumor was the most likely diagnosis. At one point, Dr. Gruner, the oncologist said that given Bo's presentation as a healthy young man, she did not believe there was a probability she would be seeing us again. She left the door open for the fact that there are VERY rare conditions that might bring us back to her, but we left the hospital that day feeling pretty good. More tests, lots of tests, and a needle biopsy on Monday the 16th were leading in the direction that things were not so good--it was not nothing, as we had hoped... But more tests indicated it was not as horrible as it could be, either... Surgery to remove he tumor was scheduled for Tuesday, June 24th. And now, here we are, with a diagnosis of pleuropulmonary blastoma, a very rare, and life threatening, childhood cancer.
That's the backstory, and I gave you all the details for a reason. I told Bo, and I believe, though I am not an overly religious person, there is a god, some higher power that controls our destiny. I believe that god is more likely to be found in physics than in the Bible, but that is neither here nor there. Everything happens for a reason, every little thing we do EVERY single day impacts the lives of others in ways so profound we can never know, but it's all important, and there are no coincidences. But look at what happened:
1. In giving his, little Johnny Jackson saved Bo's life. Most PPB cases are not diagnosed until they are beyond treatment--it is probably safe to say there have been less than a dozen cases like Bo's--EVER. But we would never know if not for Johnny Jackson.
2. How in the world did Bo find himself in the middle of the freakiest of freak accidents that would lead to a chest x-ray?
3. Why did Jay insist we go to University where despite the bureaucratic nightmares and OCCASIONAL bad doctors, like the one we had for Bo's delivery, we have a great medical team? Boone, as great as it is, would probably have sent us to University, but the time lost would have been greater...
4. How is it possible that we have come to know, only in the past three months of baseball, Mike--a 30-year survivor of a very related childhood sarcoma? This is someone to whom Bo can look for inspiration and guidance--people do make it through, grow up, have important careers and great families.
And there are so many more that will be revealed as the story unfolds. I told Bo, and I told Mike, that god only picks really special people to take on the biggest challenges, and it is always for a reason. Johnny Jackson and Mike have already played a major role in our lives, and our journey will impact others too, in ways we will never know, and some that will take a lifetime to uncover.
But, oops, my time is up again, counselor, I have my next appointment, then we can finish the story. With love, Lisa
So on Tuesday, June 10, our neighbor, Kerry, takes Bo to the pool--Pierce was at a friend's house. I'll eventually tell you more about Kerry, but without Kerry (and Kerry's whole family), I am not sure where my kids would be--she's a better disciplinarian than I am, and since she was 7 has always been there when I need her to help me out--the perfect mother's helper. And now she's HOT to boot, my boys are pretty lucky, but they don't know it yet! Anyway, that is only slightly related to the story. But it is related because at the pool there is this weird incident where the staff are working on the pool filtration system and Bo goes to the bottom of the dive pool to retrieve some dive sticks. The jets restart just as he makes it to the ladder, where Kerry is sitting, to get out. Huge bubbles of air, and probably chlorine gas that backed up in the system emerge from the pool to about two feet just as BO takes a breath. Only Kerry and Bo saw the bubbles. Kerry said she was not sure why the guard didn't see them since Bo was the only one in the pool, but I figured it was because Bo was not in any danger, and he was probably watching Kerry! After 15 minutes of coughing and sputtering, Kerry called me, and I called back to the pool to have Julie check on him. Julie is one of the club managers and someone who also has known Bo his whole life--she may have changed more of his diapers than I did, but that's another story for another day, also! Julie said he was fine (and he really was), but he was still having a hard time breathing, and not having very much fun, so Kerry brought him back to my store.
Dry drowning still in the back of my mind, watching my kid cough and sputter, throat burning from the chlorine gas, but I know that chlorine is not dangerous in a situation like that, I do what any respectable overprotective Mom with good health insurance would do--get ready to take him to the doctor! But our doctor is on vacation, so I call Jay, and like any self-respecting overprotective Dad with a heightened sense of danger from all those crazy movies guys like to watch tells me to take him to the ER at University because they have a trauma unit! Seriously I said, he is walking and talking, we don't need a trauma unit. And we ALWAYS go to Boone, we are regulars, we know the nurses, a few of the doctors--our old family doctor even works there sometimes, and because of many incidents surrounding Bo's birth, I was determined never to go back to University Hospital, but I set out, anyway. When I get there, though, there is all this construction and I don't even know where the ER is, so I go to Urgent Care, I know where that is--because kids ALWAYS get ear infections on Friday night! Just as I walk in, Jay calls me and says he is at the ER and where am I? After a short negative exchange, with me thinking "gosh, it's like he called in the Army, and now Bo seems totally fine--" you know how that goes, as soon as you get to the doctor the symptoms disappear... Well we turn around, find the ER, run into some friends on the way in--small towns are like that, and I was way more worried about Judy than Bo at this point, but we get checked, anyway, and there is no one else waiting so we don't even need to wait. How crazy is that, no waiting in the ER? If we had had to wait, even 15 minutes, I am sure Jay and I both would have decided he didn't need to be there.
The doctor checked him out, said he was fine, explained dry drowning and what to look for (this really needs to be a part of lifeguard training, and even general CPR, it only takes a minute to explain), and said that just to be positive, he was going to do a chest x-ray. At this point, even Jay knew he was going to be fine and I convinced him that we didn't both need to wasting time (remember, I am not in favor of wasting time!) so he should go back to work. We waited a LONG time for the x-ray results, and when the ER doctor came back into the exam room, he asked me if Bo had pneumonia recently, what? Outside the fateful flu incident, Bo has NEVER been sick. But the doctor said there was an unusual spot on his lung so he called for a consult and that was what was taking so long. The consulting doctor wanted a CAT scan, so three more hours after I sent Jay home, we were sent away knowing that we would be contacted by a whole bevy of doctors in the next couple days.
And we were, and we met, and at first, I think we all believed it was nothing-- inflammatory pseudotumor was the most likely diagnosis. At one point, Dr. Gruner, the oncologist said that given Bo's presentation as a healthy young man, she did not believe there was a probability she would be seeing us again. She left the door open for the fact that there are VERY rare conditions that might bring us back to her, but we left the hospital that day feeling pretty good. More tests, lots of tests, and a needle biopsy on Monday the 16th were leading in the direction that things were not so good--it was not nothing, as we had hoped... But more tests indicated it was not as horrible as it could be, either... Surgery to remove he tumor was scheduled for Tuesday, June 24th. And now, here we are, with a diagnosis of pleuropulmonary blastoma, a very rare, and life threatening, childhood cancer.
That's the backstory, and I gave you all the details for a reason. I told Bo, and I believe, though I am not an overly religious person, there is a god, some higher power that controls our destiny. I believe that god is more likely to be found in physics than in the Bible, but that is neither here nor there. Everything happens for a reason, every little thing we do EVERY single day impacts the lives of others in ways so profound we can never know, but it's all important, and there are no coincidences. But look at what happened:
1. In giving his, little Johnny Jackson saved Bo's life. Most PPB cases are not diagnosed until they are beyond treatment--it is probably safe to say there have been less than a dozen cases like Bo's--EVER. But we would never know if not for Johnny Jackson.
2. How in the world did Bo find himself in the middle of the freakiest of freak accidents that would lead to a chest x-ray?
3. Why did Jay insist we go to University where despite the bureaucratic nightmares and OCCASIONAL bad doctors, like the one we had for Bo's delivery, we have a great medical team? Boone, as great as it is, would probably have sent us to University, but the time lost would have been greater...
4. How is it possible that we have come to know, only in the past three months of baseball, Mike--a 30-year survivor of a very related childhood sarcoma? This is someone to whom Bo can look for inspiration and guidance--people do make it through, grow up, have important careers and great families.
And there are so many more that will be revealed as the story unfolds. I told Bo, and I told Mike, that god only picks really special people to take on the biggest challenges, and it is always for a reason. Johnny Jackson and Mike have already played a major role in our lives, and our journey will impact others too, in ways we will never know, and some that will take a lifetime to uncover.
But, oops, my time is up again, counselor, I have my next appointment, then we can finish the story. With love, Lisa
Friday, June 27, 2008
Why blog?
In their short existence, I have wondered why people blog... I am not an overly private person--my biggest flaw is honesty--I tell lots of people lots of things about myself most people would never disclose. It doesn't matter, people's heads are filled with so much clutter, they won't remember, right? But some people blog--they actually write down things about themselves that EVERYONE in the world can read, so they can look stupid for all eternity--really, we're all stupid sometimes, so why do people write it down? When you're nominated for that great award, whatever means something to you, do you really want your "friend" to send around the photos from the bachelorette party that were posted on someone else's myspace page, or your negative musings about the very organization (like your employer, or the Academy, or whatever) responsible for your getting the award? At least I can deny I ever thought I lost my cheese sandwich in the dryer, or that I once went to an important meeting with the President of Villanova University wearing two different shoes--that is until now. Now it's in my blog, living in cyberspace for all eternity--that should be enough to keep people from becoming escorts to prominent men, but it doesn't, who is that comic Jeanne told me about in the Jeff Foxworthy tradition who say "you can't fix stupid?"
Anyway, I am not down on bloggers, one of my top five heroes was a blogger who I never really knew and would never have known if not for a blog--I will tell you about Amy soon, but not today. And I started another blog, for my business, Super Suppers, I'll write about that sometime too, but not today. What I learned from that is that I am a lousy blogger, for the same reason I am a lousy public speaker. In most cases--I just don't think I have anything worth saying that anyone wants to hear or read! Really, how many times in your life have you listened to speeches? Hundreds, thousands--some people, like journalists must listen to millions--and how many times have you ever said, "gosh I could have listened to that person talk forever," or "wow, that was ONLY 20 minutes, they should have had that person in the program for an hour?" Maybe once, twice, I guess if n=1 million, maybe 7? But how many times have you said "man that windbag would have talked forever if the earthquake hadn't come in the middle of the seventh hour" or something to that effect? LOTS, I bet.
So, in my very long introduction, I have committed what I consider to be one of the ultimate sins. Forget the ten commandments, the greatest sin in my book is WASTING TIME--it's that undiagnosed ADHD in me. Talking or writing about stuff no one cares about is a huge waste of time, and I am one of those people who, without 27 things to do will accomplish exactly nothing. I am one of those odd ducks that LOVES to work and I like to think that because of that unusual wiring, I have had great jobs, paid and unpaid, real and volunteer, and I love that I learn new stuff all the time. And so as I begin my latest adventure, I now understand that blogging is free therapy--considering some of my favorite people are therapists, y'all better watch out--people won't need to pay your hourly rates when they can blog for FREE! And so I will blog, because it feels good, and it accomplishes something I will be unable to do for the better part of the next near--talk.
Why? Because my son has cancer, and I am lucky that there are a lot of people in the world who love him and me, and our family. But the bad part is that they want to know stuff and talk about things and I don't. I am perfectly capable of telling you more than you ever wanted to know about my battle with allergies, or gosh, I delivered two children, I can talk about hemorrhoids if you really want, or about the time I checked myself into the ER because I thought I was dying of a heart attack, and I will be glad to listen to anything anyone else wants to talk about regarding themselves, since I like to think I am a good listener and a good problem solver. However, I CAN NOT AND WILL NOT talk about the possibility that my child might die and every conversation where you tell me "your thoughts and prayer are with us," or even just ask how things are going ultimately ends, in my head, with the thought "but he still might die."
People are all different and we all need support, but we all need it in different ways and I know that some of you are hurting almost as much as I am, that you need support through this too, and I want to do that, but I can only do it my way since every ounce of my strength now has to go to Bo, and keeping myself sane, healthy and happy is the only way I can do that. I am a realist and a pessimistic optimist. I prepare for the worst so I can only ever be pleased. I am a planner by nature, and I can see every possible scenario, and plan for all of them simulataneously and calculate decision trees in my head--but that means I ALWAYS keep that worst case scenario in my head. Only by knowing it can you avoid it, but that doesn't mean I want to talk about it--I just WORK, and I work really hard and really well in a positive way, every day, to make all my dreams come true and leave the world a little better. Jay and I never discuss the fact that if he ever leaves me I will hunt him down, torture him and (this preview has been edited for viewing by all audiences)...--it is just understood, and so we don't NEED to discuss it. And my children know that people die in horrible accidents every day, but we don't discuss it, we just LIVE positively and try to avoid the bad things.
And so we will do the same with this. I will write, and then no one has to force me to talk about it--you can come here. I will post updates about his progress and his treatment, and you can write back and ask questions, and maybe other people will even answer them--we know lots of smart professionals in and around cancer. I'll even waste your time talking about other things you shouldn't care about, but when you call or see me on the street, pretend things are "normal." Talk about the weather, I LOVE weather, talk about laundry, what we should make for dinner--as this is about to become a problem I haven't experienced in a long time--or how kids never listen and raising preteens is problematic, but don't look sad and say "I am thinking about you" because then I will have to do everything I can to choke back the tears and be reminded of the fact that we both know that my child might die. I want to live like normal people and contain that part of my life here. In the rest of the world, I want to laugh and have fun, work hard, and get things done and I want Bo to have great memories despite the treatments--because I want to believe he will have memories of this time, even when he is 70!
I hope this doesn't seem insensitive. It is self-serving, self-centered and self-important--that's what blogging is, right, but through it, people find mutual support. So welcome to the blog and thanks in advance for everything--your thoughts, suggestions, support, prayers and incantations, and most of all for being a part of the journey. We all touch countless lives every single day and none of us would be here without that--the efforts of millions of people, most we don't even know, who work to help us in unseen ways every day. My hour is up, oh, but it was free, so I can do this forever, thanks counselor, I'll see you at my next appointment and then we can discuss the case history... With love, Lisa
Anyway, I am not down on bloggers, one of my top five heroes was a blogger who I never really knew and would never have known if not for a blog--I will tell you about Amy soon, but not today. And I started another blog, for my business, Super Suppers, I'll write about that sometime too, but not today. What I learned from that is that I am a lousy blogger, for the same reason I am a lousy public speaker. In most cases--I just don't think I have anything worth saying that anyone wants to hear or read! Really, how many times in your life have you listened to speeches? Hundreds, thousands--some people, like journalists must listen to millions--and how many times have you ever said, "gosh I could have listened to that person talk forever," or "wow, that was ONLY 20 minutes, they should have had that person in the program for an hour?" Maybe once, twice, I guess if n=1 million, maybe 7? But how many times have you said "man that windbag would have talked forever if the earthquake hadn't come in the middle of the seventh hour" or something to that effect? LOTS, I bet.
So, in my very long introduction, I have committed what I consider to be one of the ultimate sins. Forget the ten commandments, the greatest sin in my book is WASTING TIME--it's that undiagnosed ADHD in me. Talking or writing about stuff no one cares about is a huge waste of time, and I am one of those people who, without 27 things to do will accomplish exactly nothing. I am one of those odd ducks that LOVES to work and I like to think that because of that unusual wiring, I have had great jobs, paid and unpaid, real and volunteer, and I love that I learn new stuff all the time. And so as I begin my latest adventure, I now understand that blogging is free therapy--considering some of my favorite people are therapists, y'all better watch out--people won't need to pay your hourly rates when they can blog for FREE! And so I will blog, because it feels good, and it accomplishes something I will be unable to do for the better part of the next near--talk.
Why? Because my son has cancer, and I am lucky that there are a lot of people in the world who love him and me, and our family. But the bad part is that they want to know stuff and talk about things and I don't. I am perfectly capable of telling you more than you ever wanted to know about my battle with allergies, or gosh, I delivered two children, I can talk about hemorrhoids if you really want, or about the time I checked myself into the ER because I thought I was dying of a heart attack, and I will be glad to listen to anything anyone else wants to talk about regarding themselves, since I like to think I am a good listener and a good problem solver. However, I CAN NOT AND WILL NOT talk about the possibility that my child might die and every conversation where you tell me "your thoughts and prayer are with us," or even just ask how things are going ultimately ends, in my head, with the thought "but he still might die."
People are all different and we all need support, but we all need it in different ways and I know that some of you are hurting almost as much as I am, that you need support through this too, and I want to do that, but I can only do it my way since every ounce of my strength now has to go to Bo, and keeping myself sane, healthy and happy is the only way I can do that. I am a realist and a pessimistic optimist. I prepare for the worst so I can only ever be pleased. I am a planner by nature, and I can see every possible scenario, and plan for all of them simulataneously and calculate decision trees in my head--but that means I ALWAYS keep that worst case scenario in my head. Only by knowing it can you avoid it, but that doesn't mean I want to talk about it--I just WORK, and I work really hard and really well in a positive way, every day, to make all my dreams come true and leave the world a little better. Jay and I never discuss the fact that if he ever leaves me I will hunt him down, torture him and (this preview has been edited for viewing by all audiences)...--it is just understood, and so we don't NEED to discuss it. And my children know that people die in horrible accidents every day, but we don't discuss it, we just LIVE positively and try to avoid the bad things.
And so we will do the same with this. I will write, and then no one has to force me to talk about it--you can come here. I will post updates about his progress and his treatment, and you can write back and ask questions, and maybe other people will even answer them--we know lots of smart professionals in and around cancer. I'll even waste your time talking about other things you shouldn't care about, but when you call or see me on the street, pretend things are "normal." Talk about the weather, I LOVE weather, talk about laundry, what we should make for dinner--as this is about to become a problem I haven't experienced in a long time--or how kids never listen and raising preteens is problematic, but don't look sad and say "I am thinking about you" because then I will have to do everything I can to choke back the tears and be reminded of the fact that we both know that my child might die. I want to live like normal people and contain that part of my life here. In the rest of the world, I want to laugh and have fun, work hard, and get things done and I want Bo to have great memories despite the treatments--because I want to believe he will have memories of this time, even when he is 70!
I hope this doesn't seem insensitive. It is self-serving, self-centered and self-important--that's what blogging is, right, but through it, people find mutual support. So welcome to the blog and thanks in advance for everything--your thoughts, suggestions, support, prayers and incantations, and most of all for being a part of the journey. We all touch countless lives every single day and none of us would be here without that--the efforts of millions of people, most we don't even know, who work to help us in unseen ways every day. My hour is up, oh, but it was free, so I can do this forever, thanks counselor, I'll see you at my next appointment and then we can discuss the case history... With love, Lisa
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