It's been awhile since I've posted an update on my own personal war on cancer, so that will be today's topic.
Overall, I continue to do very well, thanks be to God.
Physically, I am able to do nearly everything I need to, although I do struggle with fatigue, some nausea and vomiting, and mild to moderate pain from the bones mets. Other, lesser side effects, such as nasal and skin problems, mouth sores, etc. also continue, but you know what? I can live with all of this!
I am definitely not as sharp as I used to be. Areas such as short term memory, multi-tasking, planning ahead and distractibility constantly plague me, but I am no longer embarrassed about these deficiencies. They have simply become a part of who I am now. Happily, I am still able to learn (and remember it for awhile) and help my kids with their school work, but if you ask me about a movie I saw a few months ago I am unlikely to remember having seen it. Which can be fun if it was a good one, as I can experience it all over again!
I had a brain scan yesterday and the news was a bit of a mixed bag, but more good than not. The tumor that was gamma knifed in February has shrunk substantially, but there are two others that seem to be slowly growing that we will need to continue to watch closely. One was the tumor that was treated individually about two years ago with stereotactic radiation, which is unfortunate. That means we only have one more shot at it before I hit max radiation for the area. This, at the moment, is my greatest concern, but I am not worrying excessively about any of it. It is what it is, and I have lots of wonderful things to distract me.
Thankfully, all other major organs remain clear and, outside of the brain, we are only battling bone metastases. As I have said many times, these will not kill me and are simply an annoyance to me for now. I am probably going to have to deal with the large one at the top of my right femur and possibly another active spot or two in my ribs/spine and sacrum. Not sure yet if it will be with targeted radiation or a change in medication, but either way I will take it as it comes.
I remain nothing but grateful for all the blessings I have received to help me along on this journey: my faith, my family and friends, the prayers of so many, my amazing doctors and excellent health insurance, my husband's job, etc., etc. I have a happy life and, most importantly, am filled with hope for the future both here and in the world to come.
Notice I did not say "ordered" or "calm" when describing my life. Although I have what I believe to be an unshakable inner peace, you will find no evidence of it if you drop by my house during the after-school witching hours, when chaos and disorder reigns! During these hours of sports, homework, dinner, and general craziness I often get overwhelmed. But I'm pretty sure that has nothing at all to do with the cancer, and everything to do with having seven beautiful, healthy children which, in my book, is no ailment at all.
Thursday, May 15, 2014
Monday, May 05, 2014
Awwww
I was sniffing around in the closet when 5 year old Natalie came in to see what I was doing.
"Do you smell something funny in here?" I asked. My nose has been stuffed up for a few days and I am not smelling things as I should.
Natalie replied, "No, I don't have a very good sniffer. I have a good heart, though. That's how God blessed me."
Absolutely precious.
"Do you smell something funny in here?" I asked. My nose has been stuffed up for a few days and I am not smelling things as I should.
Natalie replied, "No, I don't have a very good sniffer. I have a good heart, though. That's how God blessed me."
Absolutely precious.
Thursday, April 10, 2014
It Could Have Been Worse
Joey recently got his learner's permit. He got it on a Friday and had his first driving lesson on Monday.
When his lesson was complete, he drove under my supervision for the first time as we headed back to his school. On the way, he was delighting me with tales of his driving prowess. Apparently, he had "killed it" on the freeway and changing lanes and in intersections. Parking, however, needed some improvement according to both him and his instructor.
While showing the proper enthusiasm for his new skills, I gently reminded him that arrogance was not a virtue and that pride usually comes before a fall, or in this case a crash.
Lo and behold, on the drive to Paraclete High School he did an excellent job using his turn signals, making complete stops and following the speed laws. He pulled into the parking lot and I assumed he was going to pull up and we would exchange seats, but he instead decided to sharpen his parking skills.
I assessed the situation and saw he was heading into a nice open space of three parking spots in a row, so all seemed well. Until, that is, he attempted to back up in order to fit more neatly inside the lines.
Still, I was not particularly worried, as we have a backup camera in the van. He put it in reverse, backed out slowly enough, but somehow did not stop as soon as he should have. I was watching the camera thinking he might be getting a little close to the car behind us but as I opened my mouth to say, "stop!" he bumped the car in the row behind us.
Thank goodness, the damage to the other car was minimal. A relatively small dent on the bumper and no obvious paint damage. It looks like it may be able to be popped out without a trace, but we are waiting to hear for sure. My car has a little more damage...we lost a reflector light and my hatch won't currently open. Still, no one was hurt, it was not enough damage to be required to report and, really, everything was fine. My relief, however, was short-lived.
At Paraclete the teachers and staff all have their names on their parking spots, so with a sinking heart I walked to read the name on the curb, although I already knew who it was. That's right, out of the dozens and dozens of cars parked in front of Paraclete High School, Joey ran into the principal's car.
As realization dawned, he scooted off to class, mortified, and I entered the principal's office with my virtual tail between my legs. (By the way, I gave him permission to leave to calm down, and he spoke with the principal himself shortly thereafter.)
Not surprisingly, the principal was very kind about the whole incident and didn't even tell me that his car was BRAND NEW. Of course we will take care of the damage and, in the sense that Joey will certainly be sharper about backing up in the future, it is likely nothing but a blessing that it happened as it did. Of course, it is possible that our principal does not yet see it that way.
In the meantime, Joey's teachers have taken to calling him "Crash", and he has an excellent story to laugh about with his children some day. Some of us in the family (not admitting to anything here) may already be laughing.
When his lesson was complete, he drove under my supervision for the first time as we headed back to his school. On the way, he was delighting me with tales of his driving prowess. Apparently, he had "killed it" on the freeway and changing lanes and in intersections. Parking, however, needed some improvement according to both him and his instructor.
While showing the proper enthusiasm for his new skills, I gently reminded him that arrogance was not a virtue and that pride usually comes before a fall, or in this case a crash.
Lo and behold, on the drive to Paraclete High School he did an excellent job using his turn signals, making complete stops and following the speed laws. He pulled into the parking lot and I assumed he was going to pull up and we would exchange seats, but he instead decided to sharpen his parking skills.
I assessed the situation and saw he was heading into a nice open space of three parking spots in a row, so all seemed well. Until, that is, he attempted to back up in order to fit more neatly inside the lines.
Still, I was not particularly worried, as we have a backup camera in the van. He put it in reverse, backed out slowly enough, but somehow did not stop as soon as he should have. I was watching the camera thinking he might be getting a little close to the car behind us but as I opened my mouth to say, "stop!" he bumped the car in the row behind us.
Thank goodness, the damage to the other car was minimal. A relatively small dent on the bumper and no obvious paint damage. It looks like it may be able to be popped out without a trace, but we are waiting to hear for sure. My car has a little more damage...we lost a reflector light and my hatch won't currently open. Still, no one was hurt, it was not enough damage to be required to report and, really, everything was fine. My relief, however, was short-lived.
At Paraclete the teachers and staff all have their names on their parking spots, so with a sinking heart I walked to read the name on the curb, although I already knew who it was. That's right, out of the dozens and dozens of cars parked in front of Paraclete High School, Joey ran into the principal's car.
As realization dawned, he scooted off to class, mortified, and I entered the principal's office with my virtual tail between my legs. (By the way, I gave him permission to leave to calm down, and he spoke with the principal himself shortly thereafter.)
Not surprisingly, the principal was very kind about the whole incident and didn't even tell me that his car was BRAND NEW. Of course we will take care of the damage and, in the sense that Joey will certainly be sharper about backing up in the future, it is likely nothing but a blessing that it happened as it did. Of course, it is possible that our principal does not yet see it that way.
In the meantime, Joey's teachers have taken to calling him "Crash", and he has an excellent story to laugh about with his children some day. Some of us in the family (not admitting to anything here) may already be laughing.
Sunday, March 30, 2014
My God Tag
As part of my lay Christian vocation, I try to keep the presence of God with me throughout the day. Anyone can tell how well I am doing with this at any time by my demeanor. When I am successful I smile a lot and think of other people. When I am ignoring it I lose my smile and turn into myself.
One way I work on this is by finding little things that remind me of God at various times of the day. I associate things I do regularly with little aspirations that bring me back to him when I am thinking about other things.
For example, when I climb the stairs in my house I think of God. There is a particular thing I tend to leave on my bathroom counter each morning, so when I manage to put it away I think of God. If I later find it there I think of how I didn't think of him earlier and think of him then instead. Like many of you, I try to say the Angelus each day at noon or close to it. When I am in a hurry on a street with lots of red lights, I ask Mary to intercede for me and clear the way with green lights (I have found, by the way, that she is excellent at obtaining this particular favor for me, but only if I am late for reasons outside my control). And so on and so forth.
As often happens in the middle of the world, I sometimes find myself completely wrapped up in my own thoughts and plans and forget about these little things. But I try to get back to them as soon as I realize I have drifted away from them. Nonetheless, I have definitely been in need of help staying focused in this area and, surprise (!), help has arrived.
A few years ago, an anonymous friend left a bracelet for me on top of my purse while I was singing at mass. I have no idea who it was, but the person left a very nice card and box with the 2011 Brighton Breast Cancer Bracelet in it. I absolutely loved it and wore it constantly.
Later that same year when I found myself very sick post whole brain radiation, I was visited in the hospital by Fr. Paul Donlon, a priest of Opus Dei. He told me all about the scapular and enrolled me in it that very day. Over the past several years I have tried many ways to wear the scapular and have not been successful. I don't do well with necklaces of any kind and have to take them off each time I have a scan so they tend to get tangled or broken or lost.
I finally noted that a friend of mine wore a tiny scapular medal like a charm on her watch, so I got the brilliant idea of adding a small scapular to my beloved bracelet. I took it to my favorite jeweler and asked him to add the little scapular I brought along. Unfortunately, there was an incident during the post-soldering chemical bath when an unexpected metal was found in the bracelet. It's reaction to the solution dissolved part of the bracelet and stained the scapular charm a dark brown. I was so sorry to lose that bracelet and medal! However, the jeweler (who felt as bad as I did) worked with me to find another bracelet and scapular charm, and I am very happy with the result.
The new bracelet and scapular medal make a little noise when I move my arm, a jingle quite similar to that of a dog's tag on his collar. I soon realized that every time I hear that jingle it can remind me of the fact that I belong to God. So, if I happen to be shaking my fist or gesturing at something in anger, that little jingle can bring me back to the presence of God. If it sings when I am turning the steering wheel in the car, it can remind me to pray for a safe journey. The possibilities are endless! It is like a little bell from heaven, reminding me of what is really important, no matter where I am or what I am doing.
So now I have to do my part: I can't shut it out or let it become part of the noise of my life! I have to listen for it and use it the best way I am able.
I think I can, I think I can...
One way I work on this is by finding little things that remind me of God at various times of the day. I associate things I do regularly with little aspirations that bring me back to him when I am thinking about other things.
For example, when I climb the stairs in my house I think of God. There is a particular thing I tend to leave on my bathroom counter each morning, so when I manage to put it away I think of God. If I later find it there I think of how I didn't think of him earlier and think of him then instead. Like many of you, I try to say the Angelus each day at noon or close to it. When I am in a hurry on a street with lots of red lights, I ask Mary to intercede for me and clear the way with green lights (I have found, by the way, that she is excellent at obtaining this particular favor for me, but only if I am late for reasons outside my control). And so on and so forth.
As often happens in the middle of the world, I sometimes find myself completely wrapped up in my own thoughts and plans and forget about these little things. But I try to get back to them as soon as I realize I have drifted away from them. Nonetheless, I have definitely been in need of help staying focused in this area and, surprise (!), help has arrived.
A few years ago, an anonymous friend left a bracelet for me on top of my purse while I was singing at mass. I have no idea who it was, but the person left a very nice card and box with the 2011 Brighton Breast Cancer Bracelet in it. I absolutely loved it and wore it constantly.
Later that same year when I found myself very sick post whole brain radiation, I was visited in the hospital by Fr. Paul Donlon, a priest of Opus Dei. He told me all about the scapular and enrolled me in it that very day. Over the past several years I have tried many ways to wear the scapular and have not been successful. I don't do well with necklaces of any kind and have to take them off each time I have a scan so they tend to get tangled or broken or lost.
I finally noted that a friend of mine wore a tiny scapular medal like a charm on her watch, so I got the brilliant idea of adding a small scapular to my beloved bracelet. I took it to my favorite jeweler and asked him to add the little scapular I brought along. Unfortunately, there was an incident during the post-soldering chemical bath when an unexpected metal was found in the bracelet. It's reaction to the solution dissolved part of the bracelet and stained the scapular charm a dark brown. I was so sorry to lose that bracelet and medal! However, the jeweler (who felt as bad as I did) worked with me to find another bracelet and scapular charm, and I am very happy with the result.
The new bracelet and scapular medal make a little noise when I move my arm, a jingle quite similar to that of a dog's tag on his collar. I soon realized that every time I hear that jingle it can remind me of the fact that I belong to God. So, if I happen to be shaking my fist or gesturing at something in anger, that little jingle can bring me back to the presence of God. If it sings when I am turning the steering wheel in the car, it can remind me to pray for a safe journey. The possibilities are endless! It is like a little bell from heaven, reminding me of what is really important, no matter where I am or what I am doing.
So now I have to do my part: I can't shut it out or let it become part of the noise of my life! I have to listen for it and use it the best way I am able.
I think I can, I think I can...
Saturday, March 15, 2014
Escapade
I am posting from New Orleans where I am enjoying a perfect girl's getaway weekend with two of my very best friends. Jennifer, Lori and I arrived last night, settled in to our quirky Garden District hotel and have been eating, shopping, riding streetcars and most of all laughing--the kind of laughter that makes your stomach muscles ache--ever since.
Jennifer and I have been friends since second grade and together met Lori more than 25 years ago. Needless to say, we know each other very well and have a great time together no matter where we are. We have been there for one another through weddings, babies, deaths, career changes, graduations, major illnesses and teenage children, among other things. I am truly blessed to have friends like these in my life and am treasuring every moment of this rare time we have all together.
Here are some photos of today so far, as we are taking a short break between beignets and jambalaya, leaving me with a moment to post. Oh, and lest you think we are not burning off those calories, we have walked six miles today (love the pedometer) and we are not done yet!
Jennifer and I have been friends since second grade and together met Lori more than 25 years ago. Needless to say, we know each other very well and have a great time together no matter where we are. We have been there for one another through weddings, babies, deaths, career changes, graduations, major illnesses and teenage children, among other things. I am truly blessed to have friends like these in my life and am treasuring every moment of this rare time we have all together.
Here are some photos of today so far, as we are taking a short break between beignets and jambalaya, leaving me with a moment to post. Oh, and lest you think we are not burning off those calories, we have walked six miles today (love the pedometer) and we are not done yet!
At Cafe Du Monde
The Cathedral in Jackson Square
French Market
Classic!
Off to dinner now... I will try to post some more photos tomorrow.
Thursday, March 13, 2014
Interpretations
As I sit here waiting for my chemo to come out of the pharmacy and begin its slow drip into my veins, it gives me a rare opportunity to browse headlines, something I usually avoid. Today, however, I am quite interested in the missing airplane near Malaysia and am anxious to learn what has become of it and the more than 200 souls aboard.
In searching for news on the plane, I was immediately distracted when I came upon a story about how the beloved Disney movie Frozen has been interpreted by some as forwarding the gay agenda. I racked my brain to think of what could be in the film that might possibly be interpreted that way, as I have seen it many times with my kids and listen to the music almost daily when driving kids from place to place and have never noticed anything of the sort. I came up with nothing. So, I read this post by a fellow blogger but of the Mormon variety.
Based on the comments I found on that post (which really ran the gamut as you might imagine), I was equally interested to learn that someone else reported Frozen to be the "most Christian movie they had seen all year". This post, in fact, describes the parallels between Frozen and Dante's Inferno. It's amazing how people can see the very same thing so very differently, isn't it?
Both sides supported their arguments with evidence from the film and made semi-logical conclusions based on the facts presented. Nonetheless, I thought I would take a minute a propose a crazy theory of my own:
What if this entire story is totally fictional, cleverly created for our enjoyment, without any underlying, hidden meaning at all? What if the characters don't stand for anything except what they appear to be? What if there is no agenda at all behind this delightful film?
People see what they want to see. I, for one, want to see an entertaining film with something in it for all my children: princesses, heroes, villains and, of course, a talking and singing reindeer and snowman. I loved this movie and want only to see what it meant to all of us. I highly doubt that my kids are going to dig for a deeper meaning as they sing, "Let it Go" over and over, nor do I fear that images of hell or homosexuals or (gasp!) beastiality will burn themselves into their brains without us being aware of it. Let's face it: in our current society, when those who want to promote these types of messages are busy promoting them, they are hardly subtle about it, and you don't have to look for them. Rather, they assault you.
In conclusion, I want to thank the "Well Behaved Mormon Woman" and the writer who put forth the idea of Dante's Inferno on The Blaze for giving me something to blog about today and for their considered opinions that made me think about my own.
In searching for news on the plane, I was immediately distracted when I came upon a story about how the beloved Disney movie Frozen has been interpreted by some as forwarding the gay agenda. I racked my brain to think of what could be in the film that might possibly be interpreted that way, as I have seen it many times with my kids and listen to the music almost daily when driving kids from place to place and have never noticed anything of the sort. I came up with nothing. So, I read this post by a fellow blogger but of the Mormon variety.
Based on the comments I found on that post (which really ran the gamut as you might imagine), I was equally interested to learn that someone else reported Frozen to be the "most Christian movie they had seen all year". This post, in fact, describes the parallels between Frozen and Dante's Inferno. It's amazing how people can see the very same thing so very differently, isn't it?
Both sides supported their arguments with evidence from the film and made semi-logical conclusions based on the facts presented. Nonetheless, I thought I would take a minute a propose a crazy theory of my own:
What if this entire story is totally fictional, cleverly created for our enjoyment, without any underlying, hidden meaning at all? What if the characters don't stand for anything except what they appear to be? What if there is no agenda at all behind this delightful film?
People see what they want to see. I, for one, want to see an entertaining film with something in it for all my children: princesses, heroes, villains and, of course, a talking and singing reindeer and snowman. I loved this movie and want only to see what it meant to all of us. I highly doubt that my kids are going to dig for a deeper meaning as they sing, "Let it Go" over and over, nor do I fear that images of hell or homosexuals or (gasp!) beastiality will burn themselves into their brains without us being aware of it. Let's face it: in our current society, when those who want to promote these types of messages are busy promoting them, they are hardly subtle about it, and you don't have to look for them. Rather, they assault you.
In conclusion, I want to thank the "Well Behaved Mormon Woman" and the writer who put forth the idea of Dante's Inferno on The Blaze for giving me something to blog about today and for their considered opinions that made me think about my own.
Friday, February 21, 2014
The Full Report
WARNING: DO NOT PROCEED IF YOU DON'T WANT TO SEE ME IN THE GAMMA KNIFE FRAME!!!
It has been two weeks since the gamma knife and I am starting to feel more or less normal, but with a little wear and tear.
Overall, the procedure was not terrible. To my surprise, I was not knocked out for the placement of the frame. I almost panicked when I saw the dental-style chair awaiting me with the frame screws carefully laid out alongside it and nothing between it and my skull other than four shots of lidocaine in the four locations where the screws were headed.
Soon, my fears were calmed by a fast-acting milligram of Ativan and I was able to relax a little. Not enough to fail to notice the pain of the injections or ignore the eerie sensation of my skull becoming numb. Just like when the dentist numbs your lip and you experience a subsequent sensation of the numb part of your face being huge, so happened with my skull. My head felt like a giant, hard helmet to the touch. After the shots were in, though, I felt no pain.
Immediately after the frame was in place, I was measured in a fish bowl-like structure that made me look like an alien.
Don't ask me why I'm smiling in all of these pictures...must be an effect of all the brain radiation I've had, because there is really no other explanation beyond the fact that I got to sleep a lot that day and spend the whole day more or less alone (meaning without kids) with my husband, which rarely happens. We always have fun together, no matter what we are doing. Even this.
After my first MRI in the frame I had some time while they planned and programmed the radiation I was to receive later. I used that time to eat as I was not allowed to eat before the placement of the frame. It seemed like a good idea until I actually tried to get food into my mouth with the frame on. It is hard to see it in the photo above, but there was not enough room between the bottom of the frame and my mouth to drink without a contorted straw nor eat without using my fingers to shove tiny bites of food into my mouth which could not open far enough to receive them given the base of frame at my chin which blocked my jaw. Judging by Jay's reaction, it was quite amusing. I don't believe I was smiling quite so much at that point. Thankfully, there are no pictures of that to share.
After being inserted into a machine that looked like a giant hair dryer at the salon with tiny holes all around it, only metal and horizontal, and having my frame locked into the table, I promptly fell asleep. Clearly I have quite of bit of experience with being strapped to tables and being put into tiny spaces. It not only doesn't rattle me, but it is some of the best sleep I ever get. So, I really don't know how long it took, but I don't remember hearing any noise (unlike the MRI which puts me to sleep with its loud, rhythmic thumping) and I was surprised when I woke up that it was over so soon.
After that, they disconnected me, gave me some decadron to control the swelling in the brain and some antiseizure medicine as a precaucion and sent me on my way looking more or less like Chris Everett. But where is my racket?
For the first few days I felt surprisingly well. I soon realized, as I crashed into exhaustion and cloudiness for a few days after that, that it must have been from the decadron (a steroid which I really don't care for because it makes me eat uncontrollably...recall 2011 when I gained 38 pounds in 6 weeks while taking it through my whole brain radiation).
Happily, I am mostly back to my version of normal with only two little exceptions, which my doctor assures me are temporary. First, my ears have been plugged up to some degree constantly since a few days after the treatment. I thought it was a minor cold, as a few of my family members have nasty coughs right now, but was mystified when I failed to clear them with the "scuba diver" technique of plugging the nose and blowing, and even real Sudafed would not open them up. My doctor told me it was very possibly a result of minor swelling in the brain that simply pushed them out a little and that over time they will open up. As a singer, this is very disconcerting to me. However, it does bring along the benefit of dulling the noise of seven active children, so I may go into shock when they eventually clear.
The other minor effect is almost fun. When I move the skin around the scab on my left forehead. it feels like the top of my head is wiggling instead. Some weird nerve thing I guess. Very low on my totem pole.
So, now we wait. Four more weeks until I will have the MRI which will give us some preliminary information as to whether or not this worked. My doctors are confident that it has and I share that optimism.
Now, once again, we are slowly climbing up the roller coaster track. Here's hoping for less height and more level track going forward!
It has been two weeks since the gamma knife and I am starting to feel more or less normal, but with a little wear and tear.
Overall, the procedure was not terrible. To my surprise, I was not knocked out for the placement of the frame. I almost panicked when I saw the dental-style chair awaiting me with the frame screws carefully laid out alongside it and nothing between it and my skull other than four shots of lidocaine in the four locations where the screws were headed.
Soon, my fears were calmed by a fast-acting milligram of Ativan and I was able to relax a little. Not enough to fail to notice the pain of the injections or ignore the eerie sensation of my skull becoming numb. Just like when the dentist numbs your lip and you experience a subsequent sensation of the numb part of your face being huge, so happened with my skull. My head felt like a giant, hard helmet to the touch. After the shots were in, though, I felt no pain.
Immediately after the frame was in place, I was measured in a fish bowl-like structure that made me look like an alien.
Don't ask me why I'm smiling in all of these pictures...must be an effect of all the brain radiation I've had, because there is really no other explanation beyond the fact that I got to sleep a lot that day and spend the whole day more or less alone (meaning without kids) with my husband, which rarely happens. We always have fun together, no matter what we are doing. Even this.
After my first MRI in the frame I had some time while they planned and programmed the radiation I was to receive later. I used that time to eat as I was not allowed to eat before the placement of the frame. It seemed like a good idea until I actually tried to get food into my mouth with the frame on. It is hard to see it in the photo above, but there was not enough room between the bottom of the frame and my mouth to drink without a contorted straw nor eat without using my fingers to shove tiny bites of food into my mouth which could not open far enough to receive them given the base of frame at my chin which blocked my jaw. Judging by Jay's reaction, it was quite amusing. I don't believe I was smiling quite so much at that point. Thankfully, there are no pictures of that to share.
After being inserted into a machine that looked like a giant hair dryer at the salon with tiny holes all around it, only metal and horizontal, and having my frame locked into the table, I promptly fell asleep. Clearly I have quite of bit of experience with being strapped to tables and being put into tiny spaces. It not only doesn't rattle me, but it is some of the best sleep I ever get. So, I really don't know how long it took, but I don't remember hearing any noise (unlike the MRI which puts me to sleep with its loud, rhythmic thumping) and I was surprised when I woke up that it was over so soon.
After that, they disconnected me, gave me some decadron to control the swelling in the brain and some antiseizure medicine as a precaucion and sent me on my way looking more or less like Chris Everett. But where is my racket?
For the first few days I felt surprisingly well. I soon realized, as I crashed into exhaustion and cloudiness for a few days after that, that it must have been from the decadron (a steroid which I really don't care for because it makes me eat uncontrollably...recall 2011 when I gained 38 pounds in 6 weeks while taking it through my whole brain radiation).
Happily, I am mostly back to my version of normal with only two little exceptions, which my doctor assures me are temporary. First, my ears have been plugged up to some degree constantly since a few days after the treatment. I thought it was a minor cold, as a few of my family members have nasty coughs right now, but was mystified when I failed to clear them with the "scuba diver" technique of plugging the nose and blowing, and even real Sudafed would not open them up. My doctor told me it was very possibly a result of minor swelling in the brain that simply pushed them out a little and that over time they will open up. As a singer, this is very disconcerting to me. However, it does bring along the benefit of dulling the noise of seven active children, so I may go into shock when they eventually clear.
The other minor effect is almost fun. When I move the skin around the scab on my left forehead. it feels like the top of my head is wiggling instead. Some weird nerve thing I guess. Very low on my totem pole.
So, now we wait. Four more weeks until I will have the MRI which will give us some preliminary information as to whether or not this worked. My doctors are confident that it has and I share that optimism.
Now, once again, we are slowly climbing up the roller coaster track. Here's hoping for less height and more level track going forward!
Monday, February 03, 2014
Coming Soon: The Next Death-Defying Drop on the Roller Coaster of Cancer
For a very long time I have been enjoying a period of only minor irritations resulting from my ongoing treatment. There has been a brain tumor, if you have been following along, that has grown slightly over several MRIs but not enough to be a concern. Recently, it has grown more substantially and has snuck up to 13mm. Therefore, it is time to do something about it.
I am still feeling pretty well and am nearly clear systemically, but am struggling a bit with short-term memory issues and balance due to the location of this particular tumor. My wonderful oncologist referred me to a neuro oncologist who took his time reviewing all my previous brain scans and radiation records to decide what the best thing is to do. As I have already had a decent amount of radiation to my brain and am doing so well in the rest of my body, the doctors are being extremely careful to ensure my long term health while attacking the tumor effectively. I am so blessed to have the care I have.
The net-net of all this is that I will be having a procedure on Friday called the Gamma Knife. This is a high dose of radiation that is extremely accurate--sub-milimeter, in fact. And how do they get that kind of accuracy, you might ask. Of course, I am happy to tell you.
I am going to be the lucky wearer of a titanium frame that will be fixed to my skull, under the skin, with large screws. Medieval, don't you think? This image is not for the faint hearted so I won't put it directly on the blog, but if you want to see what I will look like on Friday, click here.
Of course, I plan to wear it MUCH better than that dear gentleman (although I admit that he looks quite stoic). I have plans to adorn it with ribbons, bows and maybe even a decorative bird's nest. If I have to sport that thing all day, I must make it mine!
Ok, not really. But this is how I entertain myself while awaiting a procedure such as this. Why not have some fun with it?
At any rate, aside from being restricted from driving for a few days (just in case I have any seizures, but highly unlikely) and spending a few days substantially fatigued, I shouldn't experience much in the way of side effects from this and will likely be back to myself within the week. Let's hope we can avoid killing any more brain cells than necessary because goodness knows I need every one I have left!
Mostly, I am just grateful that I am still at a point where something can be done about it and that I have such a great medical team. Thank you all for your continued prayers, they are really what is getting me through all this with such a peaceful heart.
On another, yet completely related note, Don Alvaro del Portillo will be beatified in Madrid on September 27th. As many of you know, I have been praying for his intercession in this matter since day one and believe he has helped me greatly in beating the odds thus far. God willing, I will be attending the ceremony in Madrid with some friends from LA.
Thank you again for supporting and following me and my family. Here's hoping I have the energy to post a successful post-report over the weekend!
Tuesday, January 28, 2014
In Case You Were Wondering What Is Wrong With Our World...
Check out the blog "I Look Down on Women with Husbands and Kids and I'm Not Sorry" by Amy Glass, and you will have no doubt.
In a word, it is selfishness.
This poor woman has no idea what real happiness is, which only comes from devoting oneself to others. She may experience the thrill of accomplishment that comes with a big job and lots of money, but we run-of-the mill moms know what a temporary satisfaction that is.
Real happiness comes from sitting with your six year old and hearing her successfully work out a word that you know she has never seen and isn't even phonetic. It comes from planning and preparing your husband's favorite meal when you would way rather take a nap. It is found in organizing your son's messy room so he will grin with delight when he comes home and can find all his lego figures in one place. It is in remembering on your way home from the store that your daughter asked you to buy some ridiculous snack and turning around to run in and get it just to please her.
True joy is watching your child turn from a newborn into a person with a beautiful and generous character. It is overhearing your 5 year old praying for other people. It is in sharing the peace of Christ with someone who was previously missing it. It is knowing you made a real difference in another person's life.
Sorry to tell you, Amy, but backpacking through Asia by myself is not even on my list. It would be a complete waste of my time, which is far better spent walking the dog with my family. You say, "You will never have the time, energy, freedom or mobility to be exceptional if you have a husband and kids." I couldn't disagree more. We wives and moms ARE exceptional to our husband and children. Irreplaceable, really.
You may accomplish great things during your life as far as this world is concerned, but at the end of it all, you will find yourself with the only thing that has ever been important to you: yourself. Your work will disappear with you at the end of your life, but the work of us "average" moms will live on for eternity.
Enough said.
In a word, it is selfishness.
This poor woman has no idea what real happiness is, which only comes from devoting oneself to others. She may experience the thrill of accomplishment that comes with a big job and lots of money, but we run-of-the mill moms know what a temporary satisfaction that is.
Real happiness comes from sitting with your six year old and hearing her successfully work out a word that you know she has never seen and isn't even phonetic. It comes from planning and preparing your husband's favorite meal when you would way rather take a nap. It is found in organizing your son's messy room so he will grin with delight when he comes home and can find all his lego figures in one place. It is in remembering on your way home from the store that your daughter asked you to buy some ridiculous snack and turning around to run in and get it just to please her.
True joy is watching your child turn from a newborn into a person with a beautiful and generous character. It is overhearing your 5 year old praying for other people. It is in sharing the peace of Christ with someone who was previously missing it. It is knowing you made a real difference in another person's life.
Sorry to tell you, Amy, but backpacking through Asia by myself is not even on my list. It would be a complete waste of my time, which is far better spent walking the dog with my family. You say, "You will never have the time, energy, freedom or mobility to be exceptional if you have a husband and kids." I couldn't disagree more. We wives and moms ARE exceptional to our husband and children. Irreplaceable, really.
You may accomplish great things during your life as far as this world is concerned, but at the end of it all, you will find yourself with the only thing that has ever been important to you: yourself. Your work will disappear with you at the end of your life, but the work of us "average" moms will live on for eternity.
Enough said.
Sunday, January 05, 2014
Fun in the Snow
From Left:
Tony, Rebecca, Julia, me (!), Lindsey
During this vacation week Tony, Bella and Julia all learned to snowboard, and pretty well at that. Only Bella took a lesson (at our insistence); the other two just strapped the board on and climbed on a lift. Even Jay tried to snowboard but switched back to skis before noon. Lindsey remembered how to ski after a break of several years and is our only child who has bucked the snowboard trend. Natalie had a lot of fun playing in the snow, sledding and tubing, but will wait another year before we put her on the slopes.
One of the best parts for me was that I was able to ski a half-day! I have not been skiing for more than a decade, certainly not since my cancer diagnosis, and I thought I would never ski again. The day Lindsey decided she wanted to try skiing again (she didn't love it the first few times she went, but now she is loving it) I felt quite well, so I rented some skis and went with her. I made about 5 runs, one from the very top of the mountain to the base, and to my complete surprise I did not fall at all (recall the balance issues I have struggled with since my whole brain radiation). I had such a nice time skiing with Lindsey and realizing that I could still do it after all my body has been through. I used muscles I forgot I had, and it felt great. Absolutely everyone enjoyed this trip.
As wonderfully as it all turned out, it did not start out promisingly. While we were driving up the beautiful 395, we received a text from the Pults, who had arrived first at the cabin we had rented in Incline Village for the week. When they pulled up, the saw water running down the driveway and quickly realized a pipe had burst some number of days earlier and the house was completely uninhabitable. What to do?! Lake Tahoe, the week between Christmas and New Years...seriously?! How could we find something for 13 people that was somewhat reasonable and available immediately?
We scrambled, we prayed, we tried everything we could think of. Craig's list, property management companies, with no luck. Short-term relief came when Tina's boss offered his cabin for two nights, but we would have to evacuate after that as it was going to be occupied by another family after that. Then we remembered that our friends Dave and Renee (friends from Hastings, roommates and best man in our wedding) had bought a cabin in Tahoe a few years back. Even though we had not talked to them in a while, we boldly called and asked if they might be able to help us. They were on the East Coast yet happily overnighted the key to us so we could finish our week in their lovely home. It couldn't have been more perfect and we are so very grateful to them for their trust in us.
Five minutes in, Natalie found a brand new toy she wanted to play with (they have three kids all within our kids' ages) and ripped open the box without thinking. We were mortified until we remembered the miracle of Amazon and ordered a replacement which arrived before we left and was put back exactly where the original was found. Other than that, we did not do any harm, thank goodness!
Here are some photos of our trip. We wish you all a happy New Year!
Bella
Joey
Natalie
Sunday, December 29, 2013
To God, Papa Don, A Dios
Jay's dad died on Friday morning, December 6, at 84 years of age.
He lived in Mexico for many years, so we were not with him at the time of his passing, but his wife Carmen was. By her account, it was peaceful, and we are so glad. We were blessed to have a visit from them less than two months ago, and were able to appreciate that it was probably the last time we would see him, at least in this world.
For some reason we cannot explain, Joey called him Papa Don, right from the start. All the other grandparents are called Grandma or Grandpa, but Don was "Papa", by Joey's young authority. The kids loved visits from Papa Don and Carmen even though they were few and far between. Some of the kids (Sam most recently in July) had the chance to go visit him in Mexico. Jay talked to him every week, if not more often.
This is the first grandparent our kids have lost (yes, they are fortunate in that), so it was a shock for them. Nearly all of them cried and that was very hard to see.
Jay and I took a quick trip to Guadalajara last week to attend his funeral mass and to inter his cremains. His earthly body is at rest in a beautiful church right on the shore of Lake Chapala. I am so happy we were able to go, as the mass was beautiful, with a children's choir accompanying and absolutely stunning flowers. All of Carmen's family members were there and it was very clear how much Don had been loved and cared for by them all. That gave us great joy and comfort to see.
Don gave Jay many gifts...his love for good bread, wine, opera and entertaining. He also taught Jay to be sure the person working behind the Italian deli counter, if not the owner, was actually qualified to make his sandwich. To this day he questions young employees on how exactly they plan to put together his meal and how thin the meat will be sliced. Lord help them if they mention mayonaise at any point during the conversation!
Don was the first in his family to attend college and he graduated proudly from USC. Up until the very end he loved his Trojans and never missed a televised football game to my knowledge, even after his move to Mexico. He loved to talk with people everywhere he went about every topic under the sun and enjoyed little more than a leisurely meal with deep conversation. He was fearless, retiring to Mexico knowing little of the language and not a soul in the city he chose. He became fluent in Spanish entirely on his own and figured out how to buy property, take care of his residency requirements and make a faithful circle of friends. Not many people I know would have that kind of bravery. He built a nice life for himself there and enjoyed his last years very much. We wish he hadn't moved so far from us, but are very happy that he was content.
We will have a memorial mass for Don at Sacred Heart Church in Lancaster on Saturday, January 11 at noon. All are welcome.
We will miss you Don, but are confident that we shall see you again in the kingdom of heaven. May you rest in peace.
He lived in Mexico for many years, so we were not with him at the time of his passing, but his wife Carmen was. By her account, it was peaceful, and we are so glad. We were blessed to have a visit from them less than two months ago, and were able to appreciate that it was probably the last time we would see him, at least in this world.
For some reason we cannot explain, Joey called him Papa Don, right from the start. All the other grandparents are called Grandma or Grandpa, but Don was "Papa", by Joey's young authority. The kids loved visits from Papa Don and Carmen even though they were few and far between. Some of the kids (Sam most recently in July) had the chance to go visit him in Mexico. Jay talked to him every week, if not more often.
This is the first grandparent our kids have lost (yes, they are fortunate in that), so it was a shock for them. Nearly all of them cried and that was very hard to see.
Jay and I took a quick trip to Guadalajara last week to attend his funeral mass and to inter his cremains. His earthly body is at rest in a beautiful church right on the shore of Lake Chapala. I am so happy we were able to go, as the mass was beautiful, with a children's choir accompanying and absolutely stunning flowers. All of Carmen's family members were there and it was very clear how much Don had been loved and cared for by them all. That gave us great joy and comfort to see.
Don gave Jay many gifts...his love for good bread, wine, opera and entertaining. He also taught Jay to be sure the person working behind the Italian deli counter, if not the owner, was actually qualified to make his sandwich. To this day he questions young employees on how exactly they plan to put together his meal and how thin the meat will be sliced. Lord help them if they mention mayonaise at any point during the conversation!
Don was the first in his family to attend college and he graduated proudly from USC. Up until the very end he loved his Trojans and never missed a televised football game to my knowledge, even after his move to Mexico. He loved to talk with people everywhere he went about every topic under the sun and enjoyed little more than a leisurely meal with deep conversation. He was fearless, retiring to Mexico knowing little of the language and not a soul in the city he chose. He became fluent in Spanish entirely on his own and figured out how to buy property, take care of his residency requirements and make a faithful circle of friends. Not many people I know would have that kind of bravery. He built a nice life for himself there and enjoyed his last years very much. We wish he hadn't moved so far from us, but are very happy that he was content.
We will have a memorial mass for Don at Sacred Heart Church in Lancaster on Saturday, January 11 at noon. All are welcome.
We will miss you Don, but are confident that we shall see you again in the kingdom of heaven. May you rest in peace.
Tuesday, November 19, 2013
Time Flies When You're Having Fun!
This week marks four years that I have been living with metastatic cancer.
The most remarkable thing about this (well, OK, maybe not the MOST remarkable), is that I completely forgot my own Cancerversary! A dear friend, who happened to be with me the evening of my diagnosis but now lives far away, emailed me and reminded me! For the last three years, I have been counting the years very carefully, having a minor celebration with my family each time I hit another year. So imagine how shocked I was to realized that I hadn't even given it a thought this year! Just goes to show how life goes on after awhile, with the regular cancer treatments becoming as normal as dental cleanings and the side effects just a part of who you are now.
The REALLY most remarkable thing is that I am still here and doing so amazingly well that I couldn't even be bothered to remember such a significant date in my life. When I was diagnosed, my doctor, wisely, would not give me an expected life span. I later learned that only 20% of Stage IV Breast Cancer Patients are alive after 5 years. Now, I don't want to count my chickens before they're hatched, but I am quite hopeful that a year from now I will be a part of that 20%. Did I mention that patients who receive an Omaya Reservoir (a brain port) survive, on average, 28 days after receiving it? Mine was put in two years ago this month.
Clearly, there is more than medical technology (although I certainly don't discredit that!) going on here. As anyone who has read this blog for awhile well knows, the day I learned I was metastatic (and gravely ill) I was given a prayer card for Don Alvaro del Portillo, the successor to Saint Josemaria, the founder of Opus Dei. I began asking for his intercessory prayers that day and most every day since. During the past four years he has not only become Venerable, but will be beatified in 2014, as Pope Francis recently announced. And the Vatican doesn't even know about me yet! Since receiving that card I have read all about his life and have read many things he wrote. I have no doubt he has God's ear and has been whispering pleas for me all this time. Thank you, Lord, for listening!
And to those many, many beautiful souls that have been petitioning God on my behalf, either directly or through the intercession of others, I thank you for the hammock of peace that you have placed me in during this time of ups and downs. Prayer works, it really does, and I thank you from the bottom of my heart for every prayers said on my behalf. I pray for you, too.
I also pray for the 80% that will not survive five years. I am well aware that these are fallen soldiers in this battle, from whom many things are learned that benefit those of us still living with cancer.
Ironically, I am writing this from the infusion room where I sit receiving my every-three-week Kadcyla and my Intrathecal (in the brain port) Herceptin. The advances made during the last ten years in cancer treatment are allowing people like me to live a longer time with a better quality of life. What I am really hoping is not so much that I beat the odds, but that the odds change significantly for Stage IV patients.
From where I sit (literally, in my infusion chair), I am very hopeful for the future!
The most remarkable thing about this (well, OK, maybe not the MOST remarkable), is that I completely forgot my own Cancerversary! A dear friend, who happened to be with me the evening of my diagnosis but now lives far away, emailed me and reminded me! For the last three years, I have been counting the years very carefully, having a minor celebration with my family each time I hit another year. So imagine how shocked I was to realized that I hadn't even given it a thought this year! Just goes to show how life goes on after awhile, with the regular cancer treatments becoming as normal as dental cleanings and the side effects just a part of who you are now.
The REALLY most remarkable thing is that I am still here and doing so amazingly well that I couldn't even be bothered to remember such a significant date in my life. When I was diagnosed, my doctor, wisely, would not give me an expected life span. I later learned that only 20% of Stage IV Breast Cancer Patients are alive after 5 years. Now, I don't want to count my chickens before they're hatched, but I am quite hopeful that a year from now I will be a part of that 20%. Did I mention that patients who receive an Omaya Reservoir (a brain port) survive, on average, 28 days after receiving it? Mine was put in two years ago this month.
Clearly, there is more than medical technology (although I certainly don't discredit that!) going on here. As anyone who has read this blog for awhile well knows, the day I learned I was metastatic (and gravely ill) I was given a prayer card for Don Alvaro del Portillo, the successor to Saint Josemaria, the founder of Opus Dei. I began asking for his intercessory prayers that day and most every day since. During the past four years he has not only become Venerable, but will be beatified in 2014, as Pope Francis recently announced. And the Vatican doesn't even know about me yet! Since receiving that card I have read all about his life and have read many things he wrote. I have no doubt he has God's ear and has been whispering pleas for me all this time. Thank you, Lord, for listening!
And to those many, many beautiful souls that have been petitioning God on my behalf, either directly or through the intercession of others, I thank you for the hammock of peace that you have placed me in during this time of ups and downs. Prayer works, it really does, and I thank you from the bottom of my heart for every prayers said on my behalf. I pray for you, too.
I also pray for the 80% that will not survive five years. I am well aware that these are fallen soldiers in this battle, from whom many things are learned that benefit those of us still living with cancer.
Ironically, I am writing this from the infusion room where I sit receiving my every-three-week Kadcyla and my Intrathecal (in the brain port) Herceptin. The advances made during the last ten years in cancer treatment are allowing people like me to live a longer time with a better quality of life. What I am really hoping is not so much that I beat the odds, but that the odds change significantly for Stage IV patients.
From where I sit (literally, in my infusion chair), I am very hopeful for the future!
Wednesday, October 23, 2013
Never Again!
Well, maybe one more time.
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Meet Montana, the newest Di Silvestri dog. She is a rescue dog, five or six years old and very sweet. She doesn't have a whole lot of manners yet, and the cats despise her, but we love her. We just couldn't help ourselves.
We were considering getting another dog sometime in the next few months, but we had all agreed that we did not want another Mastiff. Although they have sweet dispositions and are great with kids, they tend to have health problems and don't live very long. We did not want our kids to have to suffer another loss so soon.
However. Sometimes things you are not looking for find you. Montana was taken from her abusive owners by some women who train dogs for movie roles. One of these women is a friend of the mom of one of Julia's friends. When she heard about this dog needing a loving home, she remembered we had recently lost a Mastiff and were one of the few families she knew that was well-set up to receive a rescue dog like Montana. Someone is almost always home, there are lots of people to pay attention to her, and we already understand the character of these large but gentle beasts. So, they brought her over to meet us.
One minute was all it took.
I was the most resistant of all to the idea of another Mastiff. However, when this scarred, broken and skinny dog came up to me, shaking like a leaf, she buried her head in my lap and found her way right into my heart. She is my dog, more than anyone else's, and follows me everywhere I go. She is not allowed upstairs because she has an unhealthy interest in the cats, so I have moved most of my desk operations downstairs to spend more time with her. She wants to be a lap dog and is absolutely starved for affection. When I stop rubbing her head, she pushes back into my hand and tries to get between me and anything else I am paying attention to that doesn't include her.
This poor dog was so mistreated. She was chained to a fence most of her life and had terrible scarring around her neck from trying to pull away. When the trainers took her from her owners she had a foul smelling infection and a broken rib. She is fairly healthy now and prances around on her leash, but still has a lot of weight to gain (and doesn't eat much yet, which concerns me a bit) and plenty of manners to learn. I am finding it is difficult to teach an old dog new tricks, though it is nearly impossible to get mad at her since no one ever taught her any better. She is completely house broken, thank goodness, and doesn't bark much. She is definitely a keeper.
We won't have her for long, given her age, but she is an unexpected blessing for us right now. You know what they say..."If you want to hear God laugh, tell him your plans." Montana was not in our plans, but here she is! And we are glad.
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Meet Montana, the newest Di Silvestri dog. She is a rescue dog, five or six years old and very sweet. She doesn't have a whole lot of manners yet, and the cats despise her, but we love her. We just couldn't help ourselves.
We were considering getting another dog sometime in the next few months, but we had all agreed that we did not want another Mastiff. Although they have sweet dispositions and are great with kids, they tend to have health problems and don't live very long. We did not want our kids to have to suffer another loss so soon.
However. Sometimes things you are not looking for find you. Montana was taken from her abusive owners by some women who train dogs for movie roles. One of these women is a friend of the mom of one of Julia's friends. When she heard about this dog needing a loving home, she remembered we had recently lost a Mastiff and were one of the few families she knew that was well-set up to receive a rescue dog like Montana. Someone is almost always home, there are lots of people to pay attention to her, and we already understand the character of these large but gentle beasts. So, they brought her over to meet us.
One minute was all it took.
I was the most resistant of all to the idea of another Mastiff. However, when this scarred, broken and skinny dog came up to me, shaking like a leaf, she buried her head in my lap and found her way right into my heart. She is my dog, more than anyone else's, and follows me everywhere I go. She is not allowed upstairs because she has an unhealthy interest in the cats, so I have moved most of my desk operations downstairs to spend more time with her. She wants to be a lap dog and is absolutely starved for affection. When I stop rubbing her head, she pushes back into my hand and tries to get between me and anything else I am paying attention to that doesn't include her.
This poor dog was so mistreated. She was chained to a fence most of her life and had terrible scarring around her neck from trying to pull away. When the trainers took her from her owners she had a foul smelling infection and a broken rib. She is fairly healthy now and prances around on her leash, but still has a lot of weight to gain (and doesn't eat much yet, which concerns me a bit) and plenty of manners to learn. I am finding it is difficult to teach an old dog new tricks, though it is nearly impossible to get mad at her since no one ever taught her any better. She is completely house broken, thank goodness, and doesn't bark much. She is definitely a keeper.
We won't have her for long, given her age, but she is an unexpected blessing for us right now. You know what they say..."If you want to hear God laugh, tell him your plans." Montana was not in our plans, but here she is! And we are glad.
Monday, October 07, 2013
Thursday, October 03, 2013
Aint Nobody Got Time for Dat!
Here is the long-delayed revealing of what is happening with the tumor in my femur...in case anyone is interested.
After an X-Ray and an MRI of my right proximal femur, it appears that there is no risk for fracture and that the tumor is deep in the marrow, which may be painful but is not likely to break my bone at this time. It is a fairly large tumor, 3 inches long. Radiation was recommended for pain management.
Not too long ago I would have jumped right on the radiation table and been ready to kill that spot, but things have changed. My attitude toward this cancer has become one of more or less peaceful co-existence rather than my former desire to kill, kill, kill. Don't get me wrong, I would be thrilled to see every last bit of it gone from my body, but since that is unlikely to happen, I am working with what I have.
Yes, my leg hurts, sometimes a lot, but many days it doesn't hurt at all. After I verified with my oncologist that her recommendation to radiate was for pain only and not for a medically necessary reason, I happily declined. I've become relatively casual about cancer in the bones, because it is not going to kill me. Soft tissue organs are another story altogether, but for now all of those except the brain are totally clear.
I am way too busy to deal with radiation fatigue right now. Fall is beyond crazy, with three football teams, a competitive gymnast, and two soccer teams, not to mention confirmation prep, two scout troops, band, choir, reading club and four different schools! Throw in a husband who is gone more than he is home lately (not really complaining about that, we are blessed he has a good job) and you can see that I CAN NOT get sick. Or tired. Or spend 14 days straight driving to LA for radiation. There is just no way.
So, I have made a pact with the cancer: Don't bother me further and I won't radiate you for now. Good deal for us both, I think (though I am still waiting for confirmation from the cancer that it is on board with this). I am very happy to be in a place of peace with this disease where I can choose quality of life over trying to completely eliminate it at any cost.
What the cancer doesn't yet know is that I am going back on TDM-1, now FDA approved and called Kadcyla. The drug that worked so well for me at first diagnosis on a clinical trial is back in my life and I am really excited! I was taken off the study when my brain mets appeared (even though it is not meant to cross the blood/brain barrier) but now that it is a real, marketable drug, I am hoping it does the same thing it did the first time I used it. I hope it will knock back these bone mets so I don't need any radiation at all. Sorry, cancer, but all's fair in war, right?
So that's the latest. Everybody got time for dat!
After an X-Ray and an MRI of my right proximal femur, it appears that there is no risk for fracture and that the tumor is deep in the marrow, which may be painful but is not likely to break my bone at this time. It is a fairly large tumor, 3 inches long. Radiation was recommended for pain management.
Not too long ago I would have jumped right on the radiation table and been ready to kill that spot, but things have changed. My attitude toward this cancer has become one of more or less peaceful co-existence rather than my former desire to kill, kill, kill. Don't get me wrong, I would be thrilled to see every last bit of it gone from my body, but since that is unlikely to happen, I am working with what I have.
Yes, my leg hurts, sometimes a lot, but many days it doesn't hurt at all. After I verified with my oncologist that her recommendation to radiate was for pain only and not for a medically necessary reason, I happily declined. I've become relatively casual about cancer in the bones, because it is not going to kill me. Soft tissue organs are another story altogether, but for now all of those except the brain are totally clear.
I am way too busy to deal with radiation fatigue right now. Fall is beyond crazy, with three football teams, a competitive gymnast, and two soccer teams, not to mention confirmation prep, two scout troops, band, choir, reading club and four different schools! Throw in a husband who is gone more than he is home lately (not really complaining about that, we are blessed he has a good job) and you can see that I CAN NOT get sick. Or tired. Or spend 14 days straight driving to LA for radiation. There is just no way.
So, I have made a pact with the cancer: Don't bother me further and I won't radiate you for now. Good deal for us both, I think (though I am still waiting for confirmation from the cancer that it is on board with this). I am very happy to be in a place of peace with this disease where I can choose quality of life over trying to completely eliminate it at any cost.
What the cancer doesn't yet know is that I am going back on TDM-1, now FDA approved and called Kadcyla. The drug that worked so well for me at first diagnosis on a clinical trial is back in my life and I am really excited! I was taken off the study when my brain mets appeared (even though it is not meant to cross the blood/brain barrier) but now that it is a real, marketable drug, I am hoping it does the same thing it did the first time I used it. I hope it will knock back these bone mets so I don't need any radiation at all. Sorry, cancer, but all's fair in war, right?
So that's the latest. Everybody got time for dat!
Friday, September 27, 2013
She's Ready, Promotion, She's Ready, Promotion!
(Only Sponge Bob fans will truly appreciate this title)
At Valley View elementary you only have a parent/teacher conference if you or the teacher requests it. So when I received a request from Natalie's teacher, I thought, "Uh-oh...something is not going well!"
Imagine my surprise, then, when she recommended that Natalie be promoted out of Transitional Kindergarten (which is for 4 year olds born between Oct 1 and Dec 2) to regular Kindergarten. She is doing so well that her teacher thinks she should move up!
My plan was to send her to TK this year then to regular Kindergarten next year. As you may recall, I chose TK over a second year of preschool because I thought she was ready. I guess that was a good decision.
I told her wonderful teacher of this plan and she said she would be surprised if Natalie needed to repeat Kindergarten. She offered to write up testing results and a recommendation attesting to her readiness for first grade at the time of her application to Sacred Heart if appropriate.
I have mixed feelings about this, but am mostly leaning toward the happy side. I know she is sharp and that she likes to be challenged. I certainly don't want her to fester and grow bored when she is so eager to learn. On the other hand, I skipped a grade myself and graduated from high school at 16. I grew up a little faster than my peers and am not sure I want that for Natalie, although with a December 1 birthday she will not be nearly as young as I was. I'm sure the correct answer will be obvious come Spring when I need to decide.
Whichever way it goes, I am happy she was asked, so I just had to share it.
At Valley View elementary you only have a parent/teacher conference if you or the teacher requests it. So when I received a request from Natalie's teacher, I thought, "Uh-oh...something is not going well!"
Imagine my surprise, then, when she recommended that Natalie be promoted out of Transitional Kindergarten (which is for 4 year olds born between Oct 1 and Dec 2) to regular Kindergarten. She is doing so well that her teacher thinks she should move up!
My plan was to send her to TK this year then to regular Kindergarten next year. As you may recall, I chose TK over a second year of preschool because I thought she was ready. I guess that was a good decision.
I told her wonderful teacher of this plan and she said she would be surprised if Natalie needed to repeat Kindergarten. She offered to write up testing results and a recommendation attesting to her readiness for first grade at the time of her application to Sacred Heart if appropriate.
I have mixed feelings about this, but am mostly leaning toward the happy side. I know she is sharp and that she likes to be challenged. I certainly don't want her to fester and grow bored when she is so eager to learn. On the other hand, I skipped a grade myself and graduated from high school at 16. I grew up a little faster than my peers and am not sure I want that for Natalie, although with a December 1 birthday she will not be nearly as young as I was. I'm sure the correct answer will be obvious come Spring when I need to decide.
Whichever way it goes, I am happy she was asked, so I just had to share it.
Saturday, September 21, 2013
Puzzlement
Here in Lancaster for several years:
Recently opened right across the street:
How do you choose?!
Recently opened right across the street:
How do you choose?!
Friday, August 23, 2013
Mass Confusion
Scan time again already! I've just received the news on my tri-annual Pet/CT scan and my bi-monthly Brain MRI.
The news this time is mixed, but basically good. My lungs, liver and abdomen are all clear. On the other side of the ledger, one of my brain tumors has slightly increased again (2nd scan in a row) and the previously noted femur tumor is highly active, yet presenting as if it is confused about who and what it is.
A month or so ago I started having what I thought was hip pain. As it turns out, the pain is actually coming from the bone lesion on my right proximal femur. I mentioned it to my oncologist and since I already had a PET/CT scan scheduled for the following week, she decided to wait and see what it showed.
I was not surprised at all when the PET came back with news that the femur lesion was worsening, both in size and in intensity. That lesion has been hanging out for awhile but has never caused me pain until now and, in fact, showed healing four months ago. The strange thing is that the PET significantly flagged this spot, yet the CT didn't even mention it, only noted another lesion on the sacrum that seems to be healing.
My doctor sent me right away for an X-Ray to see what is going on. The X-Ray was inconclusive. There is no evidence of a pending fracture (yay), yet there is a "suspicious area" nonetheless. Our next step is an MRI of my right upper leg and hip to see what is really happening. I don't know why this is proving so difficult to nail down but I am definitely anxious to settle the matter.
This is the first real veer off the healing track that I've had in quite some time and I continue to feel very positive and optimistic about where I am overall. As I've mentioned often, bone mets won't kill me, just bother me. Nevertheless, I am feeling the winds of change and believe more radiation and a medication adjustment are in my near future. Not great for my energy level but certainly worth trying to beat this back before it turns into a raging wildfire.
Here's hoping that the brain tumor stops its slow growth and that we can get a clear picture of what is going on in my leg!
The news this time is mixed, but basically good. My lungs, liver and abdomen are all clear. On the other side of the ledger, one of my brain tumors has slightly increased again (2nd scan in a row) and the previously noted femur tumor is highly active, yet presenting as if it is confused about who and what it is.
A month or so ago I started having what I thought was hip pain. As it turns out, the pain is actually coming from the bone lesion on my right proximal femur. I mentioned it to my oncologist and since I already had a PET/CT scan scheduled for the following week, she decided to wait and see what it showed.
I was not surprised at all when the PET came back with news that the femur lesion was worsening, both in size and in intensity. That lesion has been hanging out for awhile but has never caused me pain until now and, in fact, showed healing four months ago. The strange thing is that the PET significantly flagged this spot, yet the CT didn't even mention it, only noted another lesion on the sacrum that seems to be healing.
My doctor sent me right away for an X-Ray to see what is going on. The X-Ray was inconclusive. There is no evidence of a pending fracture (yay), yet there is a "suspicious area" nonetheless. Our next step is an MRI of my right upper leg and hip to see what is really happening. I don't know why this is proving so difficult to nail down but I am definitely anxious to settle the matter.
This is the first real veer off the healing track that I've had in quite some time and I continue to feel very positive and optimistic about where I am overall. As I've mentioned often, bone mets won't kill me, just bother me. Nevertheless, I am feeling the winds of change and believe more radiation and a medication adjustment are in my near future. Not great for my energy level but certainly worth trying to beat this back before it turns into a raging wildfire.
Here's hoping that the brain tumor stops its slow growth and that we can get a clear picture of what is going on in my leg!
Wednesday, August 21, 2013
The First Day of the Rest of My Life
It's official. The preschool days are behind me. Today is the first time in 15 years that I have not had a child at home during the day. I never thought it would happen, but somehow it has. I now have six hours, five days a week. All. By. Myself.
YAAAAAAHOOOOOOOOO!!!
Don't get me wrong, I really love my kids. I look forward to spending time with them, especially with one or two of them at a time. I rarely go anywhere without inviting a subset to come with me for one-on-one or two-on-one time. I am a mother who prefers summer to the school year simply because we can hang out without the pressure of homework and packing lunches and getting seven children out of bed, dressed and organized properly before 7:15. I'm exhausted just writing it!
Nevertheless. I am looking at my desk piled high, baskets full of rarely-used toys and drawers full of clothes that no longer fit and I am SO EXCITED that I finally have time to devote to organizing my home!
Mostly.
If you know me, though, you can probably guess the very first thing I did when faced with this reality. That's right, I got fingerprinted, TB tested, and Virtus trained so I could volunteer at their schools for the first time ever.
And maybe I'll actually get organized too.
YAAAAAAHOOOOOOOOO!!!
Don't get me wrong, I really love my kids. I look forward to spending time with them, especially with one or two of them at a time. I rarely go anywhere without inviting a subset to come with me for one-on-one or two-on-one time. I am a mother who prefers summer to the school year simply because we can hang out without the pressure of homework and packing lunches and getting seven children out of bed, dressed and organized properly before 7:15. I'm exhausted just writing it!
Nevertheless. I am looking at my desk piled high, baskets full of rarely-used toys and drawers full of clothes that no longer fit and I am SO EXCITED that I finally have time to devote to organizing my home!
Mostly.
If you know me, though, you can probably guess the very first thing I did when faced with this reality. That's right, I got fingerprinted, TB tested, and Virtus trained so I could volunteer at their schools for the first time ever.
And maybe I'll actually get organized too.
Tuesday, July 23, 2013
World Travelers
My kids are really getting around this summer. One after another, I have seen them off and welcomed them back from their sometimes exotic locales and wonder how they got to be so lucky!
First to go were Lindsey and Julia, who were fortunate enough to go with their grandmother (Jay's mom) on a twelve day cruise from Venice, Italy through Croatia, Greece, Egypt, Israel and other exotic ports most of us will probably never see. The trip dovetailed nicely with things they had learned in school, particularly about Egypt and the Holy Land, and our entry hall table is now adorned with a photo of the girls riding a camel. Fun!
Sam went next, on a road trip with his grandmother (my mom) to Carlsbad, New Mexico. There he visited his great uncle, rode his go-kart around the ranch, canoed in the pond and generally ran around like an 11 year old boy should. On the way, he visited pueblos, saw the caverns and the painted desert and plenty of cacti.
Following this, Sam (again!) and Jay were off to Guadalajara and Puerto Vallarta, Mexico. They had a great time rappelling through the jungle, parasailing, and visiting with Jay's dad and his wife who live just outside of Guadalajara.
Meanwhile, Julia went to a week of gymnastics camp at Woodward West (a foreign land inhabited by extreme sports enthusiasts). Soon after, both Lindsey and Julia went to Pathfinder leadership camp just outside of Idyllwild/Mountain Center where, unfortunately, their week was cut short by an evacuation due to the massive wildfire burning just a few miles from their camp. I tell you, the excitement never ends around here. Nevertheless, they managed to have a wonderful time anyway and are looking forward to going back next year.
Last but certainly not least, Joey is currently in Rio de Janeiro, Brazil attending World Youth Day with a group from his school. By what I can gather from his texts and the Facebook page the group is updating along the way, it is the experience of a lifetime. I am so happy he can have this chance to be surrounded by at least a million other young people from all over the world who are on fire with their faith and I pray that the fruits of this excursion last a lifetime.
For my part, I am happy to be at home (I've done my share of running around this year as well, as you know!) feeding whoever is here, keeping an eye on swimming children for hours on end, doling out popsicles by the handful, and watching lots and lots of movies with my kids during this blessed time of no homework.
Also staying put with me back at the homestead, Tony is feeling like he is old enough to have a trip of his own as all of the older kids have had. Having just turned 8 he may be almost ready, but not this year. Bella and Natalie haven't yet begun asking about when they might have a turn. They are content for now to have a little time alone with me each week (breakfast out, a trip to the store, etc.) and to have friends over to swim and spend the night as often as possible.
School will begin again in just two weeks for three of the kids, and I am already mourning the passing of this very short summer. Where did it go?
But, oh, the places they went!
First to go were Lindsey and Julia, who were fortunate enough to go with their grandmother (Jay's mom) on a twelve day cruise from Venice, Italy through Croatia, Greece, Egypt, Israel and other exotic ports most of us will probably never see. The trip dovetailed nicely with things they had learned in school, particularly about Egypt and the Holy Land, and our entry hall table is now adorned with a photo of the girls riding a camel. Fun!
Sam went next, on a road trip with his grandmother (my mom) to Carlsbad, New Mexico. There he visited his great uncle, rode his go-kart around the ranch, canoed in the pond and generally ran around like an 11 year old boy should. On the way, he visited pueblos, saw the caverns and the painted desert and plenty of cacti.
Following this, Sam (again!) and Jay were off to Guadalajara and Puerto Vallarta, Mexico. They had a great time rappelling through the jungle, parasailing, and visiting with Jay's dad and his wife who live just outside of Guadalajara.
Meanwhile, Julia went to a week of gymnastics camp at Woodward West (a foreign land inhabited by extreme sports enthusiasts). Soon after, both Lindsey and Julia went to Pathfinder leadership camp just outside of Idyllwild/Mountain Center where, unfortunately, their week was cut short by an evacuation due to the massive wildfire burning just a few miles from their camp. I tell you, the excitement never ends around here. Nevertheless, they managed to have a wonderful time anyway and are looking forward to going back next year.
Last but certainly not least, Joey is currently in Rio de Janeiro, Brazil attending World Youth Day with a group from his school. By what I can gather from his texts and the Facebook page the group is updating along the way, it is the experience of a lifetime. I am so happy he can have this chance to be surrounded by at least a million other young people from all over the world who are on fire with their faith and I pray that the fruits of this excursion last a lifetime.
For my part, I am happy to be at home (I've done my share of running around this year as well, as you know!) feeding whoever is here, keeping an eye on swimming children for hours on end, doling out popsicles by the handful, and watching lots and lots of movies with my kids during this blessed time of no homework.
Also staying put with me back at the homestead, Tony is feeling like he is old enough to have a trip of his own as all of the older kids have had. Having just turned 8 he may be almost ready, but not this year. Bella and Natalie haven't yet begun asking about when they might have a turn. They are content for now to have a little time alone with me each week (breakfast out, a trip to the store, etc.) and to have friends over to swim and spend the night as often as possible.
School will begin again in just two weeks for three of the kids, and I am already mourning the passing of this very short summer. Where did it go?
But, oh, the places they went!
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