It's family prayer time...the part where we all go around and state our specific intentions.
Tony says: "And I pray for mommy's cancer...."
There is silence, as the kids process this. Then come some smiles and suppressed giggles.
Tony is looking proud of himself for remembering me in his intentions.
Finally, Jay says: "You mean, that the cancer does BADLY, right? You're not rooting for the cancer, are you?"
Tony, burying his head under the covers, just nods. Everyone is relieved.
Friday, January 21, 2011
Wednesday, January 12, 2011
Natalie
Poor Natalie. As the seventh child, she is most definitely not as well-documented as her older siblings.
As I delighted in her antics this morning, I decided to dedicate a post just to her, so we could take note of some of the things I am not writing in her baby book. (Since I haven't made one for her. YET, of course. I plan to get right on that.)
Because she is preceded by a sister with such a strong personality (I speak, of course, of Bella), I tend to think of Natalie as having a mild-mannered temperament. However, she is quite her own person with plenty of spunk of her own. She definitely has her opinions and makes them known.
Natalie, more than any of my other children, is influenced by her siblings. Now that Joey and Lindsey are old enough to help care for her, she spends a decent amount of time being carted around, bathed, changed or fed by her older siblings. Even Sam and Julia help her out a lot, and she knows to go to any of the older four children for the things she needs. If she wants milk, she asks whoever she finds first. It is really the first time one of my children looks to their older siblings as often or more often than to me. This is not a bad or a good thing, it just is what it is. I appreciate the help and she loves the attention.
As you might imagine, spending so much time with older brothers and sisters brings its own dimension to her personality. For instance, as we were sitting in church a few Sundays ago, waiting for mass to begin, Natalie stood up, wiggled her little rear and enthusiastically shouted, "Conga, conga, conGA!". I didn't have to ask where she learned that, as her older siblings nearly fell under the pew trying to control their laughter.
Similarly, last month she delighted me with her statement, "I Santa. Ho Ho Ho!" It was followed shortly by the clicking sound the reindeer make on the roof as she chanted, "Reindeer, reindeer, reindeer." I was convinced she was the smartest two year old on the planet until I realized that she had been carefully coached. Although I am still convinced of her obvious intelligence, I now understand that Julia invested a decent amount of time imparting this critical knowledge to her.
Less delightful is her penchant for coloring. On the walls, on the couch, on herself. I took her to the doctor yesterday for a vaccination and was completely embarrassed when I removed her clothes and found not one but two marker colors broadly decorating her torso and legs.
Jay and I joke that as far as candy is concerned, Natalie is like one of those pigs who can sniff out truffles in the forest. If she is silent for more than two minutes (and I am sure there are no markers in the vicinity) I can be sure that she has moved stools, stacked things or otherwise connived to locate any hidden stash of candy anywhere in the house and is helping herself liberally. You can't imagine how many times I've heard an outraged cry of an older sibling who has found their Halloween candy, or birthday treat bag, rooted through and completely looted.
Natalie LOVES Dora. I felt a little guilty about how much of it I let her watch when I heard her count to seven in Spanish yesterday (remember she is just 25 months old). I quickly buried my guilt, however, with the consolation that she will be a leg up when she begins her Spanish classes in high school.
Natalie is going to be quite the ballerina some day (the linebacker body and tree trunk legs notwithstanding). She asks me to sing the "Ballerina" Song (made famous by Miss Kitty) and twirls and twirls until I stop. Her grand finale is usually a seat drop wherever she is, be it on carpet or on tile, which never fails to crack up the rest of the family.
She is definitely her mother's daughter in that she savors her food. Every time she takes a bite of anything she says, "MmmmmMMMM!" and beams at me. She never fails to say, "Thank you!" for anything I give her. She has also learned that a well placed, "Pleeeeeeeease?" goes a long way with us all. She greets me enthusiastically whenever I return to the house (even if I just took something to the trash) and runs to me, hugging my leg. I will miss that someday. She says, "I love you!" all day long, and I never get tired of hearing it.
There are a million more things to say about her amazing little personality and her entertaining activities, but I think this serves its purpose. So, Natalie, please know that although I can not chronicle your life as if you were an only child, you delight me as much as if you were one. I love you!
Monday, January 03, 2011
Humble Acknowlegement
My last scans came in clear. Again.
This means that every scan since last April has been free from active cancer. My breast shows no evidence that there was ever a tumor in it. My liver has no lesions. My bones, though scarred, show no significant uptake on PET scan. I have one little "hot spot" on a single rib that is almost certainly a microfracture over a healed lesion . And that is all.
For some reason, even though I have had good scan after good scan, I have been reluctant to declare myself as the miracle I know that I am. Jay has been anxious for our NED party, but I have not been able to give the all clear for it. Perhaps it is because I have been quite guarded that this good news could end at any time, or maybe it is because I am waiting for the bones to completely heal (which they may never do). Whatever the reason has been, it is time to move forward.
So here is my declaration: I am a walking miracle! God has chosen to heal me, has heard all the prayers and has answered them. Apparently, I have more to do here on earth (no pressure, right?!). I am humbled and so very grateful, especially for my family who needs me.
My oncologist told me at my last visit that I have demonstrated a "complete response" to treatment. In other words, I am in remission as far as Stage IV can be in remission. He very frankly told me that he didn't know what to do with me now, that no one could know, as we sailed off the map long ago on this clinical trial. Should we go off the medicine and hope the cancer does not return or should we keep on with it for a good while? He does not know and neither do I. He has to assume, based on his years of experience, that there are still some cancerous cells in my body that are just too small to see radiologically. Yet, he also says I might be cured. Only God knows.
So, for now, we have decided to continue with the treatments since the side effects are tolerable for me (certainly versus the potential alternative!). This decision was made easier due to the fact that T-DM1 is not yet commercially available and I could not go back to it if I wanted to.
While I cannot technically have a NED party (No Evidence of Disease) since my bones show plenty of evidence, I most certainly can have a CR (Complete Response) party and intend to do so shortly. I think I will wait for one more clean scan, just to be sure, and then, with all of you as witness to this promise, will set a date and start the planning.
And there you have it.
This means that every scan since last April has been free from active cancer. My breast shows no evidence that there was ever a tumor in it. My liver has no lesions. My bones, though scarred, show no significant uptake on PET scan. I have one little "hot spot" on a single rib that is almost certainly a microfracture over a healed lesion . And that is all.
For some reason, even though I have had good scan after good scan, I have been reluctant to declare myself as the miracle I know that I am. Jay has been anxious for our NED party, but I have not been able to give the all clear for it. Perhaps it is because I have been quite guarded that this good news could end at any time, or maybe it is because I am waiting for the bones to completely heal (which they may never do). Whatever the reason has been, it is time to move forward.
So here is my declaration: I am a walking miracle! God has chosen to heal me, has heard all the prayers and has answered them. Apparently, I have more to do here on earth (no pressure, right?!). I am humbled and so very grateful, especially for my family who needs me.
My oncologist told me at my last visit that I have demonstrated a "complete response" to treatment. In other words, I am in remission as far as Stage IV can be in remission. He very frankly told me that he didn't know what to do with me now, that no one could know, as we sailed off the map long ago on this clinical trial. Should we go off the medicine and hope the cancer does not return or should we keep on with it for a good while? He does not know and neither do I. He has to assume, based on his years of experience, that there are still some cancerous cells in my body that are just too small to see radiologically. Yet, he also says I might be cured. Only God knows.
So, for now, we have decided to continue with the treatments since the side effects are tolerable for me (certainly versus the potential alternative!). This decision was made easier due to the fact that T-DM1 is not yet commercially available and I could not go back to it if I wanted to.
While I cannot technically have a NED party (No Evidence of Disease) since my bones show plenty of evidence, I most certainly can have a CR (Complete Response) party and intend to do so shortly. I think I will wait for one more clean scan, just to be sure, and then, with all of you as witness to this promise, will set a date and start the planning.
And there you have it.
Saturday, December 25, 2010
Merry Christmas to ALL
Julia made sure the reindeer were not forgotten, and that Santa was sure to know that these were for his team, not diet food for himself.We wish you all a very Merry Christmas. May peace and joy permeate your home this day.
Suzanne and Family
P.S. Apologies for not posting the news of Joey's pathology, as many of you have asked. His lymph node tested negative for everything and the doctors have concluded that it just reacted to something and went a little crazy. He is healthy and completely through with all of this. Thanks for your concern and prayers!
Wednesday, December 08, 2010
Over and Done With (I Hope!)
We are home!
Joey had surgery yesterday to remove the inexplicably swollen lymph node in his neck, and all went very well, thanks be to God. Nonetheless, his surgeon admitted him for observation overnight and as anyone who has ever been in the hospital knows, it is a bit like the roach motel...you can check in, but you can't check out! It took hours and hours to clear him for departure today and we were both literally dancing out of the ward when we were finally released.
Since I've had such a life-saving experience at UCLA we chose to have Joey's surgery there. Once again I was impressed by the care we received, not just medically but from a human standpoint as well. Everyone was so very kind and accommodating, which helps a lot when you are worried about your kid.
The surgery took about two hours and left Joey with a roughly two inch incision mid-neck with a small drain, which was removed right before we left today. He was amazingly stoic throughout the whole thing and didn't even need any pain meds at all today. His doctor ended up removing two lymph nodes rather than just the one since it had become fused to its neighbor due to its significant swelling. She assured me that he still has plenty left and that he won't miss these at all. Since she managed to deftly avoid the two nerves that ran right through the area and maintain all of Joey's facial movement I am feeling quite grateful to her.
Joey's lymph node is now in pathology where it will be dissected and cultured a dozen ways to see if they can figure out exactly what went haywire with it. We should have results in a few days. His blood shows no sign of infection of any kind, so if the pathology is clean this may be the end of this all. I certainly hope that is the case.
Thanks to those of you who have been praying for him and checking in to see how he is. We are truly grateful.
Here is a picture of Joey acting goofy right as they were wheeling him into the OR. The meds hadn't yet put him under but clearly had done their job in relaxing him. You can see the lymph node protruding from the left side (his right). He is not sorry to have that bulge gone.
Here's to great medical insurance...hip hip hooray!
Joey had surgery yesterday to remove the inexplicably swollen lymph node in his neck, and all went very well, thanks be to God. Nonetheless, his surgeon admitted him for observation overnight and as anyone who has ever been in the hospital knows, it is a bit like the roach motel...you can check in, but you can't check out! It took hours and hours to clear him for departure today and we were both literally dancing out of the ward when we were finally released.
Since I've had such a life-saving experience at UCLA we chose to have Joey's surgery there. Once again I was impressed by the care we received, not just medically but from a human standpoint as well. Everyone was so very kind and accommodating, which helps a lot when you are worried about your kid.
The surgery took about two hours and left Joey with a roughly two inch incision mid-neck with a small drain, which was removed right before we left today. He was amazingly stoic throughout the whole thing and didn't even need any pain meds at all today. His doctor ended up removing two lymph nodes rather than just the one since it had become fused to its neighbor due to its significant swelling. She assured me that he still has plenty left and that he won't miss these at all. Since she managed to deftly avoid the two nerves that ran right through the area and maintain all of Joey's facial movement I am feeling quite grateful to her.
Joey's lymph node is now in pathology where it will be dissected and cultured a dozen ways to see if they can figure out exactly what went haywire with it. We should have results in a few days. His blood shows no sign of infection of any kind, so if the pathology is clean this may be the end of this all. I certainly hope that is the case.
Thanks to those of you who have been praying for him and checking in to see how he is. We are truly grateful.
Here is a picture of Joey acting goofy right as they were wheeling him into the OR. The meds hadn't yet put him under but clearly had done their job in relaxing him. You can see the lymph node protruding from the left side (his right). He is not sorry to have that bulge gone.
Here's to great medical insurance...hip hip hooray!
Monday, November 22, 2010
Post Season Report
Perhaps the football team she cheered for didn't win any games this year, but at least its cheerleaders were champions.Julia and her talented squad brought home the first place trophy at yesterday's cheer competition, and boy did they deserve it! I could not believe how good they were. They are, after all, only seven and eight year olds, but darned if they didn't pull off a complicated, original, perfectly synchronized and virtually flawless performance. As soon as I get the DVD I ordered I might have to put it on youtube for you all to enjoy.
Both my girls kept their routines tightly under wraps in order to surprise me on competition day, and I was so completely delighted by not only Julia's but also by Lindsey's unique and playful performance. Lindsey's team did not place this year (don't get me started on why she should have placed above a team that relied on a raunchy dance to secure its trophies) but that did not diminish the beauty of a job well done for her team as well. I'm very proud of my girls and somewhat surprised (and don't quote me on this) to discover that cheerleading actually IS a real sport. Kind of.
Like my football players, my girls have learned to be part of a team, how to rely on one another, how to win and lose, and that a group is only as strong as its weakest link. Plus, they've learned to yell really, really loudly, and when is that not a skill to be valued in a family of seven children?!
As for the end of the football season, Sam's team lost in second round playoffs and Joey's team lost in the championship game. So, neither brought home the first place trophy, but both had a great season and played for well-coached and classy teams. All in all, a great year.
So, while everyone around here is a little depressed that football is over for the year, I am personally reveling in the fact that for the next six months I don't have to stuff pads, run the practice trolley and keep track of multiple hair bows. I'm entering my off season as well, and I'm pretty happy about that. Whew!
Thursday, November 18, 2010
Tuesday, November 16, 2010
Happy Cancerversary to Me!
One year ago today I was given the news that would change my life, and that of my family and friends, forever.
Cancer.
Four days later I learned the unimaginable...Stage IV, no possible cure.
On this day one year ago, I could not have imagined the challenges and blessings that this year would bring. I wouldn't have predicted how close to the brink I would come and how resoundingly I would bounce back. I could never have guessed how tightly my family, friends and community would embrace me and how they would keep me from falling. I couldn't have understood that this bleak diagnosis would do so many wonderful things for me.
For here I stand, one year later, a stronger and more peaceful person. Confident in God's love and mercy, sure that whatever path he ultimately chooses for me is the right one. Not afraid of anything life might throw at me now. Grateful for each and every day I have to (hopefully) positively influence the character of my children. Astounded at how completely this disease has backed away from the medication I have been blessed with. Unshakable in my belief in the power of prayer.
No one knows how much time they have left. I am not unique in my situation, unless I consider statistics. But I won't. I have already won the lottery of life in my faith, my marriage, my family and my friends. This gift of unexpected health one year after bracing for an early death is decidedly a great bonus, and I will gladly accept many more to come, if that it what is to be. And you know? I'm feeling more and more optimistic that this will be the case.
Thanks so much for all your prayers and support over the past year. I wouldn't be here without them!
Cancer.
Four days later I learned the unimaginable...Stage IV, no possible cure.
On this day one year ago, I could not have imagined the challenges and blessings that this year would bring. I wouldn't have predicted how close to the brink I would come and how resoundingly I would bounce back. I could never have guessed how tightly my family, friends and community would embrace me and how they would keep me from falling. I couldn't have understood that this bleak diagnosis would do so many wonderful things for me.
For here I stand, one year later, a stronger and more peaceful person. Confident in God's love and mercy, sure that whatever path he ultimately chooses for me is the right one. Not afraid of anything life might throw at me now. Grateful for each and every day I have to (hopefully) positively influence the character of my children. Astounded at how completely this disease has backed away from the medication I have been blessed with. Unshakable in my belief in the power of prayer.
No one knows how much time they have left. I am not unique in my situation, unless I consider statistics. But I won't. I have already won the lottery of life in my faith, my marriage, my family and my friends. This gift of unexpected health one year after bracing for an early death is decidedly a great bonus, and I will gladly accept many more to come, if that it what is to be. And you know? I'm feeling more and more optimistic that this will be the case.
Thanks so much for all your prayers and support over the past year. I wouldn't be here without them!
Sunday, November 14, 2010
Order Up
We have been busy writing our letters to Santa.
It is my understanding that the elves have less stress in their lives if they have time to respond to specific Christmas requests, so we are getting a leg up and starting early this year.
The way it works around here is that each child asks Santa for three things and can reasonably expect to receive one of those things, at Santa's discretion. So, for the last few days I have been sitting with each child and helping them write their letters.
This afternoon Bella said to me, "I'm going to put my princess bike with the baby carrier on back, my princess scooter and my princess kitchen all next to my bed." I stopped for a minute to process what she had said (it always takes me awhile since her chatter is near-continuous) and then realized that she had listed all three things from her Santa letter, as if they were a done deal.
"Bella," I said, "you know that Santa generally only brings one of the things from your list, right?"
She paused and thought this over for a moment. "No." She finally said with complete confidence. "I ordered all three."
It is my understanding that the elves have less stress in their lives if they have time to respond to specific Christmas requests, so we are getting a leg up and starting early this year.
The way it works around here is that each child asks Santa for three things and can reasonably expect to receive one of those things, at Santa's discretion. So, for the last few days I have been sitting with each child and helping them write their letters.
This afternoon Bella said to me, "I'm going to put my princess bike with the baby carrier on back, my princess scooter and my princess kitchen all next to my bed." I stopped for a minute to process what she had said (it always takes me awhile since her chatter is near-continuous) and then realized that she had listed all three things from her Santa letter, as if they were a done deal.
"Bella," I said, "you know that Santa generally only brings one of the things from your list, right?"
She paused and thought this over for a moment. "No." She finally said with complete confidence. "I ordered all three."
Saturday, November 06, 2010
From the Football Field
It's been a great season!
We just returned from Sam's first round playoff game, which his team decisively won. Joey's team had a bye for the first round of playoffs because of their regular season ranking, so that was nice. What this all means is that now both boys advance to round 2 of playoffs. If either or both win next Saturday, they will go on the the Superbowl. We've got our fingers crossed!
Sam, after playing most of the season on defense only, was put on offense today as well with good results. The kid is not afraid of hitting and comes off the line like a heat-seeking missile. It is really fun to watch. He has turned in some nice sacks this season, which always gets me on my feet in the stands.
Joey is now playing tight end and wide receiver on offense, and defensive end and tackle on defense. He has had a really good year in these positions and made his first touchdown--an impressive jump for the pass followed by a 30 or 40 yard run--a few games ago. He has been a solid pass catcher since.
It seems a funny thing to say, but I am so grateful for football and the character that it is helping instill in my boys. When Joey first played two years ago he was a third string player. He could not finish his lap without walking and he begged to quit that first week of conditioning hell. Three years later he is a leader on his team, playing almost every snap, and is someone his team needs to win. A few weeks ago I watched him at practice as he went back, after finishing his run, to help along a teammate who was struggling. Not long ago that struggling kid was Joey, and it is through three years of consistent hard work that he has changed his situation.
From football my boys are learning how to be part of a team, how to be counted on and, best of all, how working hard at something over time can bear great fruit. They are learning how to win, how to lose and how to help lift up another person for the greater good of the team. They are learning how to receive praise when they've earned it and honest criticism when they require it.
If I could have known that first week of football three seasons ago how much I would come to appreciate this sport that, at the time, I thought was going to break my firstborn, I wouldn't have believed it.
Go Rebels!
We just returned from Sam's first round playoff game, which his team decisively won. Joey's team had a bye for the first round of playoffs because of their regular season ranking, so that was nice. What this all means is that now both boys advance to round 2 of playoffs. If either or both win next Saturday, they will go on the the Superbowl. We've got our fingers crossed!
Sam, after playing most of the season on defense only, was put on offense today as well with good results. The kid is not afraid of hitting and comes off the line like a heat-seeking missile. It is really fun to watch. He has turned in some nice sacks this season, which always gets me on my feet in the stands.
Joey is now playing tight end and wide receiver on offense, and defensive end and tackle on defense. He has had a really good year in these positions and made his first touchdown--an impressive jump for the pass followed by a 30 or 40 yard run--a few games ago. He has been a solid pass catcher since.
It seems a funny thing to say, but I am so grateful for football and the character that it is helping instill in my boys. When Joey first played two years ago he was a third string player. He could not finish his lap without walking and he begged to quit that first week of conditioning hell. Three years later he is a leader on his team, playing almost every snap, and is someone his team needs to win. A few weeks ago I watched him at practice as he went back, after finishing his run, to help along a teammate who was struggling. Not long ago that struggling kid was Joey, and it is through three years of consistent hard work that he has changed his situation.
From football my boys are learning how to be part of a team, how to be counted on and, best of all, how working hard at something over time can bear great fruit. They are learning how to win, how to lose and how to help lift up another person for the greater good of the team. They are learning how to receive praise when they've earned it and honest criticism when they require it.
If I could have known that first week of football three seasons ago how much I would come to appreciate this sport that, at the time, I thought was going to break my firstborn, I wouldn't have believed it.
Go Rebels!
Thursday, November 04, 2010
Finally, I'm Queen!
So what if it's of a hive of bees? A queen is a queen.
In other Halloween news, Edward's got nothing on Tony...
Sam and his friend Darian chased eachother around all night long...
And Bella flashed her winning smile, oblivious to her sister's plight behind her.
Joey was "too old" (his proclamation, not mine) to dress for Halloween this year (sniff, sniff) and elected to stay in to watch the Steelers/Saints game rather than take the neighborhood for all its candy.
How is it that he's too old and I'm not? Perhaps I'd better not think about that too much.
In other Halloween news, Edward's got nothing on Tony...
Sam and his friend Darian chased eachother around all night long...
And Bella flashed her winning smile, oblivious to her sister's plight behind her.
Joey was "too old" (his proclamation, not mine) to dress for Halloween this year (sniff, sniff) and elected to stay in to watch the Steelers/Saints game rather than take the neighborhood for all its candy.
How is it that he's too old and I'm not? Perhaps I'd better not think about that too much.
Tuesday, October 26, 2010
Where's McDreamy?
Life has been a medical drama as of late. I would so much rather watch this all on Grey's Anatomy with a big bowl of popcorn than experience it all myself! Nonetheless, after many stressful days we have had a number of happy endings that I thought I would share.
First of all, Joey has had a very swollen lymph node under his jaw for over a month now. It is just about a square inch in size and is very noticeable. It looks like he's storing a golf ball or a walnut in his neck. His pediatrician tried antibiotics, thinking it was infected. They did not help, so he was referred to an Ear-Nose-Throat specialist. That doctor ordered a CT scan, a fine needle biopsy and six buckets of bloodwork. After nearly two weeks of waiting, we have finally learned that the biopsy is non-cancerous (as you can imagine, that is what we were mostly worried about given my history) and shows, basically, nothing at all. He has now been referred to a Pediatric Infectious Disease specialist at UCLA for follow up. I spoke to this new doctor on the phone today. After reviewing Joey's case he feels that this is probably a non-specific viral infection (in other words, something we humans haven't identified yet) that will probably resolve on its own in a few months. He will see him next week and will follow through with him until it is resolved, but he basically told me not to worry, so I will try not to! Whew!
Meanwhile, I myself had my routine PET/CT last week and received the results yesterday. Overall, the scans look great as far as the cancer is concerned, but I have developed some sort of lung infection (as anyone who has seen me in the last six weeks can attest to, since I can hardly make it through a sentence without coughing). I now have a pulmonologist who is reviewing my scan images and may or may not decide to stick a tube down my throat in the next few days to pull out some of what's in there and analyze it. The fun just keeps on coming! He assures me that, given the relaxation drugs they will give me to keep me from gagging, I might actually thank him rather than hate him after the procedure. I will reserve judgment on that.
My oncologist's concern is the possibility that my anti-cancer drug is causing this infection, which is why he is so all over this. Since my drug is untested, he has to be careful with any side effects that show up, as they could be medication-induced. It is probably a standard cough, especially since Jay and Lindsey also had one, but, as Dr. Glaspy put it, he did not save me from cancer to watch me die of a lung infection that he could put a stop to. Have I mentioned that I like him? A lot? Well, I do.
So, that's about it from here. I have to close so I can go pick up Julia from school--they just called to tell me she's sick. Why am I not surprised?!
First of all, Joey has had a very swollen lymph node under his jaw for over a month now. It is just about a square inch in size and is very noticeable. It looks like he's storing a golf ball or a walnut in his neck. His pediatrician tried antibiotics, thinking it was infected. They did not help, so he was referred to an Ear-Nose-Throat specialist. That doctor ordered a CT scan, a fine needle biopsy and six buckets of bloodwork. After nearly two weeks of waiting, we have finally learned that the biopsy is non-cancerous (as you can imagine, that is what we were mostly worried about given my history) and shows, basically, nothing at all. He has now been referred to a Pediatric Infectious Disease specialist at UCLA for follow up. I spoke to this new doctor on the phone today. After reviewing Joey's case he feels that this is probably a non-specific viral infection (in other words, something we humans haven't identified yet) that will probably resolve on its own in a few months. He will see him next week and will follow through with him until it is resolved, but he basically told me not to worry, so I will try not to! Whew!
Meanwhile, I myself had my routine PET/CT last week and received the results yesterday. Overall, the scans look great as far as the cancer is concerned, but I have developed some sort of lung infection (as anyone who has seen me in the last six weeks can attest to, since I can hardly make it through a sentence without coughing). I now have a pulmonologist who is reviewing my scan images and may or may not decide to stick a tube down my throat in the next few days to pull out some of what's in there and analyze it. The fun just keeps on coming! He assures me that, given the relaxation drugs they will give me to keep me from gagging, I might actually thank him rather than hate him after the procedure. I will reserve judgment on that.
My oncologist's concern is the possibility that my anti-cancer drug is causing this infection, which is why he is so all over this. Since my drug is untested, he has to be careful with any side effects that show up, as they could be medication-induced. It is probably a standard cough, especially since Jay and Lindsey also had one, but, as Dr. Glaspy put it, he did not save me from cancer to watch me die of a lung infection that he could put a stop to. Have I mentioned that I like him? A lot? Well, I do.
So, that's about it from here. I have to close so I can go pick up Julia from school--they just called to tell me she's sick. Why am I not surprised?!
Wednesday, October 13, 2010
Happy National Metastatic Breast Cancer Awareness Day
You've probably noticed that it's "Pink October". Everywhere you look there are pink ribbons intended to make people aware of breast cancer. I think we can safely say that, by now, just about everyone is aware of it.
Most of the time, breast cancer reports are accompanied by survival stories--courageous tales of women who have taken a stance against this nasty disease and beaten it. Happily, there are many such stories.
Very rarely does a news report focus on those 160,000 or so of us that are living with metastatic breast cancer--that which has spread to other parts of the body. This is probably because there aren't very many happy endings in this subset of cancer patients. It is not inspiring to fund research for those who, statistically, only have an average of three years to live. People want to help those who can win, and more often than not those with early stage breast cancer CAN win. So I completely understand this focus.
Many women with metastatic breast cancer feel left out and overlooked. I know this because I am active on discussion boards for those in my situation. Although I personally am delighted by any research or awareness done, as it ultimately benefits us all, I nonetheless am happy to report that today is National Metastatic Breast Cancer Awareness day. The intent of this day is to educate the general public about those of us living with more advanced breast cancer. And while, no, it's not curable like early stage breast cancer, it IS treatable, and we are living longer and longer with this chronic condition. I, for one, plan to be here much longer than average!
There is a nice article today about it in the Huffington Post, here.
Now that you know, have some cake or something!
Most of the time, breast cancer reports are accompanied by survival stories--courageous tales of women who have taken a stance against this nasty disease and beaten it. Happily, there are many such stories.
Very rarely does a news report focus on those 160,000 or so of us that are living with metastatic breast cancer--that which has spread to other parts of the body. This is probably because there aren't very many happy endings in this subset of cancer patients. It is not inspiring to fund research for those who, statistically, only have an average of three years to live. People want to help those who can win, and more often than not those with early stage breast cancer CAN win. So I completely understand this focus.
Many women with metastatic breast cancer feel left out and overlooked. I know this because I am active on discussion boards for those in my situation. Although I personally am delighted by any research or awareness done, as it ultimately benefits us all, I nonetheless am happy to report that today is National Metastatic Breast Cancer Awareness day. The intent of this day is to educate the general public about those of us living with more advanced breast cancer. And while, no, it's not curable like early stage breast cancer, it IS treatable, and we are living longer and longer with this chronic condition. I, for one, plan to be here much longer than average!
There is a nice article today about it in the Huffington Post, here.
Now that you know, have some cake or something!
Monday, October 11, 2010
Two Lessons Learned?
One thing about driving a fuel efficient car: it's not very fast going uphill. It COULD be, if I took it off of eco-mode, but since I got it for its gas mileage, I simply won't do that. Therefore, I have recently become accustomed to semi-irate people behind me, tailgating and gesturing until I can graciously move over and let them by. Now, I am not moving at unsafe speeds, mind you. I'm simply not engaging in the speed demonics of the drivers in my area, which irritates them to no end.
A few days ago, as I was moseying up a freeway on-ramp, I noticed a motorcycle so close on my tail that I could hardly see him in my rearview mirror. I was thinking to myself, "That's really not smart, to tailgate someone so closely especially when on a motorcycle."
Simultaneously, I noticed Bella, who in this car can easily reach the window button for the first time in her young life, dangling a little pink purse out the window. I had just finished talking to her about this on our last car ride. I explained that if she let go of whatever toy she was holding, she would never see it again. She seemed to take it to heart and rolled up her window at the time, but here she was just a few hours later doing it again. I had not noticed earlier or else I would have rolled up the window and engaged the lock.
Before I could fully process these two concurrent events, I witnessed, in my rearview mirror, the pink purse fly out of Bella's grasp and solidly thwack the motorcyclist in the head. Thankfully, he did not swerve or falter (for if he had, this story wouldn't be quite so amusing). I watched in horror as he removed one hand from his handlebars so that it could be put to maximum gesturing use. He shook his fist, he gave me a, "What the heck?!" and then he passed me on the left. All of this happened in a split second. Bella still hadn't even time to understand that she had lost her purse.
As I slowly began to understand what had just happened (about the time Bella let out the first of a solid 20 minute wall of wails), I was struck with the poetic justice of it all. Dangle a toy out of the window? You will surely lose it. Tailgate at a dangerous distance? You're sure to regret it.
How lovely to quite passively instruct both a preschooler and a motorcyclist in one fell swoop.
A few days ago, as I was moseying up a freeway on-ramp, I noticed a motorcycle so close on my tail that I could hardly see him in my rearview mirror. I was thinking to myself, "That's really not smart, to tailgate someone so closely especially when on a motorcycle."
Simultaneously, I noticed Bella, who in this car can easily reach the window button for the first time in her young life, dangling a little pink purse out the window. I had just finished talking to her about this on our last car ride. I explained that if she let go of whatever toy she was holding, she would never see it again. She seemed to take it to heart and rolled up her window at the time, but here she was just a few hours later doing it again. I had not noticed earlier or else I would have rolled up the window and engaged the lock.
Before I could fully process these two concurrent events, I witnessed, in my rearview mirror, the pink purse fly out of Bella's grasp and solidly thwack the motorcyclist in the head. Thankfully, he did not swerve or falter (for if he had, this story wouldn't be quite so amusing). I watched in horror as he removed one hand from his handlebars so that it could be put to maximum gesturing use. He shook his fist, he gave me a, "What the heck?!" and then he passed me on the left. All of this happened in a split second. Bella still hadn't even time to understand that she had lost her purse.
As I slowly began to understand what had just happened (about the time Bella let out the first of a solid 20 minute wall of wails), I was struck with the poetic justice of it all. Dangle a toy out of the window? You will surely lose it. Tailgate at a dangerous distance? You're sure to regret it.
How lovely to quite passively instruct both a preschooler and a motorcyclist in one fell swoop.
Tuesday, September 28, 2010
My Wish is Granted
There is a metastatic breast cancer conference in Indianapolis in mid-October that I really want to attend.
So much of the information and resources available on breast cancer are mainly applicable to early stage patients--once metastases are diagnosed, it is a whole different ball game, and this conference is solely dedicated to treatment and quality of life issues for those of us a little farther down the line with this disease.
I registered for the conference awhile ago thinking that I would use Jay's air miles to fly there. But, alas, when I went to book my flight I found that my travel dates were blacked out on all three of the airlines we use miles on. I had never considered that! So, I decided that our family had other financial priorities and set about canceling my plans.
As I was just about to notify the group of ladies I was planning to meet there (united through the message boards at breastcancer.org, a wonderful and active forum for those grappling with the ins and outs of breast cancer of all types), I took one last visit to the conference web site to see what I would be missing.
That's when I noticed the "grant" section. It stated that anyone with metastatic breast cancer who would not be attending the conference due to financial concerns could request a grant for airfare. I thought, "Hey, that's me!" So I wrote and asked for airfare.
Within a few hours, my grant was requested! Genentech (let me tell you, I am beginning to like that company more and more) and the Susan G. Komen foundation have sponsored my airfare so I can attend this conference without straining my family's finances. I am positively giddy!
So, off I will go in October to learn about all the latest and not-yet-to market treatments for metastatic breast cancer, to meet others who are taking the same drug as I am, to attend Q&A panels where I can ask every question I've ever had about all things cancer and treatment related.
I am delighted, and totally grateful for the opportunity.
So much of the information and resources available on breast cancer are mainly applicable to early stage patients--once metastases are diagnosed, it is a whole different ball game, and this conference is solely dedicated to treatment and quality of life issues for those of us a little farther down the line with this disease.
I registered for the conference awhile ago thinking that I would use Jay's air miles to fly there. But, alas, when I went to book my flight I found that my travel dates were blacked out on all three of the airlines we use miles on. I had never considered that! So, I decided that our family had other financial priorities and set about canceling my plans.
As I was just about to notify the group of ladies I was planning to meet there (united through the message boards at breastcancer.org, a wonderful and active forum for those grappling with the ins and outs of breast cancer of all types), I took one last visit to the conference web site to see what I would be missing.
That's when I noticed the "grant" section. It stated that anyone with metastatic breast cancer who would not be attending the conference due to financial concerns could request a grant for airfare. I thought, "Hey, that's me!" So I wrote and asked for airfare.
Within a few hours, my grant was requested! Genentech (let me tell you, I am beginning to like that company more and more) and the Susan G. Komen foundation have sponsored my airfare so I can attend this conference without straining my family's finances. I am positively giddy!
So, off I will go in October to learn about all the latest and not-yet-to market treatments for metastatic breast cancer, to meet others who are taking the same drug as I am, to attend Q&A panels where I can ask every question I've ever had about all things cancer and treatment related.
I am delighted, and totally grateful for the opportunity.
Thursday, September 23, 2010
I'll Bet She's Never Heard THAT One Before
Lindsey is working on a book report for school. As part if it, she has to write down the first sentence of the book she just read. This she will read out loud to the class when she presents her report later this week. No problem, right?
Wrong.
Lindsey came to me very upset because the first sentence of her Newbery Award Winning Book called Al Capone Does My Shirts has a *bad word* in it. Indeed, the phrase, "bird turd" happens to be in the very opening sentence of the book. Go figure!
(Although, if you know the book is about life on Alcatraz, and if you've ever been there yourself, you'd know why that was an appropriate opening line.)
"Mom!" she wailed, "I can't say 'turd' in front of the class! I'll get in trouble and they'll laugh at me!"
As I choked back my laughter and attempted to put on my concerned parent face, I assured her that she could not possibly get in trouble for following instructions for a book she is most certainly allowed if not encouraged to read. I read it myself so I know that it is a clean, decent book. It just happens to open with an attention-getter.
I suggested that if she was concerned that she should talk to her teacher about it. But, no. She is way too shy to broach this particular topic. So guess what I got to do tonight? That's right! I wrote a note. To Lindsey's teacher, telling her about this whole turd situation and could we please work something out, as Lindsey's progress on her report has stalled out of sheer panic.
As I wrote, I wondered if she had ever received such a note in her teaching career. I have certainly never written one like it. I'm also pretty sure I've never written the word 'turd' before today.
I think I liked my previous status better.
Wrong.
Lindsey came to me very upset because the first sentence of her Newbery Award Winning Book called Al Capone Does My Shirts has a *bad word* in it. Indeed, the phrase, "bird turd" happens to be in the very opening sentence of the book. Go figure!
(Although, if you know the book is about life on Alcatraz, and if you've ever been there yourself, you'd know why that was an appropriate opening line.)
"Mom!" she wailed, "I can't say 'turd' in front of the class! I'll get in trouble and they'll laugh at me!"
As I choked back my laughter and attempted to put on my concerned parent face, I assured her that she could not possibly get in trouble for following instructions for a book she is most certainly allowed if not encouraged to read. I read it myself so I know that it is a clean, decent book. It just happens to open with an attention-getter.
I suggested that if she was concerned that she should talk to her teacher about it. But, no. She is way too shy to broach this particular topic. So guess what I got to do tonight? That's right! I wrote a note. To Lindsey's teacher, telling her about this whole turd situation and could we please work something out, as Lindsey's progress on her report has stalled out of sheer panic.
As I wrote, I wondered if she had ever received such a note in her teaching career. I have certainly never written one like it. I'm also pretty sure I've never written the word 'turd' before today.
I think I liked my previous status better.
Tuesday, September 21, 2010
Today's Embarassing Preschooler Comment
Bella and are in mass today, at the really quiet part after communion, when out of the blue she announces loudly, "I miss my OLD daddy."
What?!
Who's her new daddy, that's what I'd like to know! (And probably so do the dozen or so people sitting near us that must have heard her.)
Update: Turns out, she was talking about her great grandfather who she never met. She finds it unfair that she never met our grandparents and has been asking to see pictures of them and so forth. Mystery solved! Just took me a few days to get to the bottom of it.
What?!
Who's her new daddy, that's what I'd like to know! (And probably so do the dozen or so people sitting near us that must have heard her.)
Update: Turns out, she was talking about her great grandfather who she never met. She finds it unfair that she never met our grandparents and has been asking to see pictures of them and so forth. Mystery solved! Just took me a few days to get to the bottom of it.
Wednesday, September 15, 2010
Insightful
We have a new car! Well, it's almost 2 weeks old now, but that's still new, right? I'm bubbling over with enthusiasm for it, so I just have to share.
After examining our budget and our driving needs carefully, Jay and I decided that we really had to get a fuel efficient car. Truly, we couldn't afford NOT to. We were spending upwards of $700 per month on gas given how often we go to Los Angeles now, and the fact that we have one car that gets 18 miles per gallon and another just 10. Moreover, since Jay has our Toyota van parked at the airport not infrequently, I am driving around in the huge gas guzzler with only one or two children during the day--rarely do I have all the children with me at once and need the giant van.
We tracked how many miles we were driving and calculated how much we would save in gas by adding a 40mpg car to our garage. We realized a new car would pay for itself while giving us the security of having a more reliable car to take to Los Angeles (the Toyota van is rapidly approaching 200k miles and is starting to require frequent repairs). Plus, if we drive our big church van less, it will last longer...hopefully until we don't need it anymore. Seemed like a no-brainer to us!
After researching all the available options (we seriously considered four cars in all), we settled on the Honda Insight Hybrid. After driving it nearly 1300 miles (in just 12 days--I TOLD you we drive a lot!) we couldn't love it more. We have averaged 47 miles per gallon and everything we read tells us that the mileage improves over time as we get more used to driving efficiently and the car gets broken in. This beats the numbers in our spreadsheet, so it was even more definitely a good decision. It was quite inexpensive for a new car...and Honda is having its 2010 clearance right now so they are offering all kinds of favorable deals.
Our favorite part about the Insight is the feedback it gives the driver. It actually helps you to drive it more efficiently. In some ways, it's like a giant video game. You earn "leaves" on your screen for driving efficiently and you lose them when you accelerate or brake too fast. It's all about slow and steady wins the race. When you drive efficiently for a certain amount of time you can earn trophies and more layers of leaves on your "tree". It's pathetically fun. Plus, you can watch your real time average of mpg and it catalogs your last three trips along with your current one, so you can see how you're doing over time (or criticize your spouse for their less than optimal fuel efficiency, if that's what you prefer to do with the information).
At any rate, we love our new addition and highly recommend the Honda Insight to anyone who might be in the market for a more fuel efficient car. But hurry...the 2010 clearance is ending soon (oh, and get the internet price...it's quite a bit less than the sticker!).
After examining our budget and our driving needs carefully, Jay and I decided that we really had to get a fuel efficient car. Truly, we couldn't afford NOT to. We were spending upwards of $700 per month on gas given how often we go to Los Angeles now, and the fact that we have one car that gets 18 miles per gallon and another just 10. Moreover, since Jay has our Toyota van parked at the airport not infrequently, I am driving around in the huge gas guzzler with only one or two children during the day--rarely do I have all the children with me at once and need the giant van.
We tracked how many miles we were driving and calculated how much we would save in gas by adding a 40mpg car to our garage. We realized a new car would pay for itself while giving us the security of having a more reliable car to take to Los Angeles (the Toyota van is rapidly approaching 200k miles and is starting to require frequent repairs). Plus, if we drive our big church van less, it will last longer...hopefully until we don't need it anymore. Seemed like a no-brainer to us!
After researching all the available options (we seriously considered four cars in all), we settled on the Honda Insight Hybrid. After driving it nearly 1300 miles (in just 12 days--I TOLD you we drive a lot!) we couldn't love it more. We have averaged 47 miles per gallon and everything we read tells us that the mileage improves over time as we get more used to driving efficiently and the car gets broken in. This beats the numbers in our spreadsheet, so it was even more definitely a good decision. It was quite inexpensive for a new car...and Honda is having its 2010 clearance right now so they are offering all kinds of favorable deals.
Our favorite part about the Insight is the feedback it gives the driver. It actually helps you to drive it more efficiently. In some ways, it's like a giant video game. You earn "leaves" on your screen for driving efficiently and you lose them when you accelerate or brake too fast. It's all about slow and steady wins the race. When you drive efficiently for a certain amount of time you can earn trophies and more layers of leaves on your "tree". It's pathetically fun. Plus, you can watch your real time average of mpg and it catalogs your last three trips along with your current one, so you can see how you're doing over time (or criticize your spouse for their less than optimal fuel efficiency, if that's what you prefer to do with the information).
At any rate, we love our new addition and highly recommend the Honda Insight to anyone who might be in the market for a more fuel efficient car. But hurry...the 2010 clearance is ending soon (oh, and get the internet price...it's quite a bit less than the sticker!).
Monday, September 06, 2010
Take Five
The venerable Cardinal Newman will be beatified by Pope Benedict later this month. If you are interested in learning a little more about him and his writing in the wake of this event, I recommend this approachable book, co written by Mike Aquilina and Father Juan Velez: Take Five: Meditations with John Henry Newman.
If, like me, you like to do a little spiritual reading each day but find it difficult to fit it in, this book is a perfect read. It is designed to be consumed in five minute chunks and takes the extensive works of this great author and boils them down to their most relevant points. It also puts the work in the context of his life, which helps to understand where he is coming from.
If you are interested in learning a little more about Cardinal Newman, especially since we will be seeing a lot about him in the news over the next few weeks, this is a good source.
Happy reading!
If, like me, you like to do a little spiritual reading each day but find it difficult to fit it in, this book is a perfect read. It is designed to be consumed in five minute chunks and takes the extensive works of this great author and boils them down to their most relevant points. It also puts the work in the context of his life, which helps to understand where he is coming from.
If you are interested in learning a little more about Cardinal Newman, especially since we will be seeing a lot about him in the news over the next few weeks, this is a good source.
Happy reading!
Saturday, September 04, 2010
Now That's A Friend
This morning was "picture day" for my football players and cheerleaders. They had to be at the field in full uniform by 7am. No, that was not a typo. 7am.
Football players? No problem. Roll out of bed, no fuss, no muss. Cheerleaders are an entirely different story. They require hairdos that match their team. They must have the correct (out of three, mind you) hair bow. They go out with curls. They need hair product.
I am terrible with girl hair. TERRIBLE. This is not a good thing for a mother of 4 girls. When I got the requirements for the girls' hair a few days ago, I panicked. Lindsey had to have her bangs french braided into a high, curled ponytail. Julia's was a little easier, just a high curly pony, but still quite a challenge for someone like me. I was stressing to my neighbor about this and, in typical Robin fashion, she set about solving it for me.
She found our good friend Julie, who has been doing cheer hair for years, and before I knew it Julie and her daughter Alyssia (our long-time babysitter) arrived at our house at 6am this morning armed with curlers and mousse. The result was great hair, unified teams for both girls and a really relived mom (me!). Not to mention how happy my girls were that their hair actually got done correctly!
If I was unsure, before this morning, as to whether or not I had good friends (which, happily, I wasn't), I DEFINITELY know it now. Thanks, ladies.
Football players? No problem. Roll out of bed, no fuss, no muss. Cheerleaders are an entirely different story. They require hairdos that match their team. They must have the correct (out of three, mind you) hair bow. They go out with curls. They need hair product.
I am terrible with girl hair. TERRIBLE. This is not a good thing for a mother of 4 girls. When I got the requirements for the girls' hair a few days ago, I panicked. Lindsey had to have her bangs french braided into a high, curled ponytail. Julia's was a little easier, just a high curly pony, but still quite a challenge for someone like me. I was stressing to my neighbor about this and, in typical Robin fashion, she set about solving it for me.
She found our good friend Julie, who has been doing cheer hair for years, and before I knew it Julie and her daughter Alyssia (our long-time babysitter) arrived at our house at 6am this morning armed with curlers and mousse. The result was great hair, unified teams for both girls and a really relived mom (me!). Not to mention how happy my girls were that their hair actually got done correctly!
If I was unsure, before this morning, as to whether or not I had good friends (which, happily, I wasn't), I DEFINITELY know it now. Thanks, ladies.
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