Hello again! Long time no post. I thought it was about time I let you know that I am still among you, and am just too busy and exhausted to post regularly.
The good news is that the Taxol/Perjeta/Herceptin/Xeloda combination is working very well. My last scan showed no evidence of disease from the neck down, and that is the very first time I have achieved that since my initial diagnosis. It took an aggressive combination to knock out bone metastasis that would just not go away. Further, my one small brain tumor did not grow at all in 2 months. We will check it again in a few weeks, but for now all is well.
The bad news is that this combo of medications has really taken its toll on me. I struggle to make it through my days and rely on medication to get me through the worst of it. I vomit nearly daily and have little to no notice it is coming. If it wasn't such a disgusting topic, I would post a collection of horrifying yet hysterical-in-retrospect vomit moments from the last three months. I have quite a list, and it continues to grow. More than anything, though, I am tired, tired, tired. I feel (and yes, I know this is ridiculous), like I have become the laziest person on earth. All I want to do is sleep and watch TV. Yet, being the mother of seven is not compatible with this plan, so I get up and go.
There are bright spots, too. Every four to six weeks my treatments line up so that I get a whole week without any chemo at all. When this happens I perk up and start frantically catching up with all I missed doing during the prior weeks (further evidence that the inherent laziness is only a myth, but I am still unwilling to accept it).
In other news, my mom has moved in with us and that is working out very nicely. She has had some medical problems and we didn't like having her on her own, so now she's not! I am using some of my "spare time" to get her house cleaned out and hopefully rented by the first of the year. Or so. It is lovely to have her here and she is a great help with the kids, helping with homework, hanging out with them and driving when she can.
Blessings to all of you and until next time (whenever that may be...), take care!
Wednesday, October 29, 2014
Friday, August 22, 2014
Loving the GPS
I have a new GPS app called Waze. It has a social media aspect to it and uses data from its users to route you most effectively from point A to point B. Since using this program, I have driven through many neighborhoods I would have never otherwise seen and am alerted to things like accidents, stalls and even police officers and photo lights lurking ahead. I have learned not to question the route it gives me, even if it seems illogical, as it always turns out that Waze knows more than I do. Unlike Siri.
This morning, on my way to Cedars-Sinai, it sent me up Beverly Glen and down Bedford through Beverly Hills. What beautiful houses I got to see, all the while avoiding the near-standstill freeway traffic. If you don't currently have this app, I highly recommend it!
I realize that it may seem a bit strange to post something like this after a two month blog silence, but I had to start somewhere! Summer slipped away from me, but now that the kids are back in school, hopefully I will have more time to slow down and notice the many blessings around me and take the time to share them here.
This summer was full of wonderful craziness--an exchange student from Valencia, Spain (Maria, whom we all fell in love with), trips to Hawaii and Disneyland, as well as a few local beach days. It seems like we never stopped.
Another thing that never stopped is the chemo, chemo and more chemo. I am still not loving Taxol but am obviously tolerating it well enough to run around like a crazy person. I have brain scan next month to check on some slow-growing tumors, but other than that, there is not a lot to report. Anyone who sees me semi-regularly knows I have lost my hair, but am consoling myself with a little retail therapy and have found a number of chemo beanies and hats that actually make me feel chic rather than bald!
The kids are doing well. Joey is starting tight end on Varsity and thinking about college. He takes his driving test at the end of this month. Lindsey just started Paraclete high school and signed up for 6 different clubs (love that enthusiasm!). Sam is thriving in 8th grade and football, happier than I have ever seen him. Julia is back at Sacred Heart for 6th grade after a year of exploring the wonders of public school, is still an excellent student and a talented gymnast. Tony is in 3rd grade, loving Pee Wee football. Bella is preparing for her First Holy Communion in 2nd grade while cheering for Pee Wee football and taking gymnastics as well. Natalie started Sacred Heart as a 1st grader and is also cheering for Tony. I am exhausted all over again, just reading through this, but everyone is happy and busy.
Jay is doing great, loves his job at IBM, still travels quite a bit, and has kicked up his daily workouts to monumental heights (in my estimation, anyway). Wherever he is, he finds a gym. I have to admire his tenacity as I will use any excuse I can find to NOT exercise. He says it makes him feel great. I'll have to take his word for it.
So, all is well, one day at a time is my motto (sometimes one hour at a time). Hope all is equally well with my cyber readers!
This morning, on my way to Cedars-Sinai, it sent me up Beverly Glen and down Bedford through Beverly Hills. What beautiful houses I got to see, all the while avoiding the near-standstill freeway traffic. If you don't currently have this app, I highly recommend it!
I realize that it may seem a bit strange to post something like this after a two month blog silence, but I had to start somewhere! Summer slipped away from me, but now that the kids are back in school, hopefully I will have more time to slow down and notice the many blessings around me and take the time to share them here.
This summer was full of wonderful craziness--an exchange student from Valencia, Spain (Maria, whom we all fell in love with), trips to Hawaii and Disneyland, as well as a few local beach days. It seems like we never stopped.
Another thing that never stopped is the chemo, chemo and more chemo. I am still not loving Taxol but am obviously tolerating it well enough to run around like a crazy person. I have brain scan next month to check on some slow-growing tumors, but other than that, there is not a lot to report. Anyone who sees me semi-regularly knows I have lost my hair, but am consoling myself with a little retail therapy and have found a number of chemo beanies and hats that actually make me feel chic rather than bald!
The kids are doing well. Joey is starting tight end on Varsity and thinking about college. He takes his driving test at the end of this month. Lindsey just started Paraclete high school and signed up for 6 different clubs (love that enthusiasm!). Sam is thriving in 8th grade and football, happier than I have ever seen him. Julia is back at Sacred Heart for 6th grade after a year of exploring the wonders of public school, is still an excellent student and a talented gymnast. Tony is in 3rd grade, loving Pee Wee football. Bella is preparing for her First Holy Communion in 2nd grade while cheering for Pee Wee football and taking gymnastics as well. Natalie started Sacred Heart as a 1st grader and is also cheering for Tony. I am exhausted all over again, just reading through this, but everyone is happy and busy.
Jay is doing great, loves his job at IBM, still travels quite a bit, and has kicked up his daily workouts to monumental heights (in my estimation, anyway). Wherever he is, he finds a gym. I have to admire his tenacity as I will use any excuse I can find to NOT exercise. He says it makes him feel great. I'll have to take his word for it.
So, all is well, one day at a time is my motto (sometimes one hour at a time). Hope all is equally well with my cyber readers!
Tuesday, June 17, 2014
So Many Things
As usual, life has gotten away from me and I haven't posted in a long time. Yet, so many things have happened in the time since my last post, I couldn't decide what to write about first. So, I decided to do a condensed version of everything right here.
Most significantly, on Memorial Day we lost Jay's mom Elizabeth Lester at the age of 80. She lived about two miles away from us and was very involved in the kids' lives. She was a great help to us all in terms of driving the kids home from school and taking them to buy the things they needed, bringing dinner over regularly, delivering things we needed from Costco, etc. Losing her was a big blow to our family and we miss her. She loved to take the kids to the zoo, the library and many other places, even when it got hard for her.
Liz had a peaceful and happy death, which is all any of us can ask for. We have known for about a year and a half that she had an ocular melanoma and, as she chose no treatment, that the the end would come. However, she tripled her estimated life span and was in good health up until the last two weeks of her life. Only the last four days found her very ill and only the last 24 hours did she need constant care. She died at home, as she wished, with a small smile and a beautiful expression on her face. Thank you so much to all of you who sent cards, flowers and condolences to our family. She will be missed.
On a happier note, in early April Joey received the sacrament of Confirmation. This was a beautiful things for us all, as he chose our faith for himself. Of course we were hoping he would choose to be confirmed, but the choice was truly his own. He prepared well with a retreat the weekend before and two years of preparation at the church. He really thought about it and questioned what he needed to question. We hope and pray his choice will bear fruit for him throughout his life.
In May, Tony received his first Holy Communion. As usual, the sacrament was beautiful and we were delighted to see it. Five down, two to go! Bella will receive hers next Spring and Natalie the following year.
Earlier this month, Lindsey graduated from Sacred Heart School after 9 years there. She received a number of leadership, music and service awards, and we are very proud of her. She will go to Paraclete High School in the fall. Time does fly!
Julia recently moved up another level in gymnastics. As a new level 6 she gets to compete optional rather than compulsory routines, which means she can choose her own combinations of elements as well as her floor music. She just returned from a week at Woodward West camp in Tehachapi where she was able to master a number of new skills. I love watching her grow and excel in her chosen sport, and she is truly a joy to watch.
Also in the extreme sports category, Sam also was at Woodward West last week but in the scooter program. He is getting very good on his scooter and learned a back and front flip while he was there. I tried for awhile to get the video on here but failed completely. So, you will have to trust me, he is awesome!
On the cancer front, I have just started a new chemo regime to get back on top of the slow creep we have been experiencing of late. It is a good strategic move, but my body is not enjoying it as much as it could. I am now on a new combo for Her2+ specific cancer and am, for the first time, on Taxol which is not targeted and affects all rapidly dividing cells. I am almost to certain to lose my hair (again!) in the next week or so and am experiencing a decent amount of bone and muscle pain as well as fatigue. So it goes. If it works, it is worth it all.
Finally, we are taking our every-other year family vacation, courtesy of Jay's airline miles and hotel points, next week. 10 days in Hawaii (Kauai and Kona), nine people, totally free, flights, hotel and rental cars. This is our reward for Jay's near-constant travel. Speaking of that, he is in Israel this week and having a wonderful time exploring Nazareth and the surrounding areas when he is done with his work day.
Hope all is well with you all and that your summer is blessed with all good things!
Most significantly, on Memorial Day we lost Jay's mom Elizabeth Lester at the age of 80. She lived about two miles away from us and was very involved in the kids' lives. She was a great help to us all in terms of driving the kids home from school and taking them to buy the things they needed, bringing dinner over regularly, delivering things we needed from Costco, etc. Losing her was a big blow to our family and we miss her. She loved to take the kids to the zoo, the library and many other places, even when it got hard for her.
Liz had a peaceful and happy death, which is all any of us can ask for. We have known for about a year and a half that she had an ocular melanoma and, as she chose no treatment, that the the end would come. However, she tripled her estimated life span and was in good health up until the last two weeks of her life. Only the last four days found her very ill and only the last 24 hours did she need constant care. She died at home, as she wished, with a small smile and a beautiful expression on her face. Thank you so much to all of you who sent cards, flowers and condolences to our family. She will be missed.
On a happier note, in early April Joey received the sacrament of Confirmation. This was a beautiful things for us all, as he chose our faith for himself. Of course we were hoping he would choose to be confirmed, but the choice was truly his own. He prepared well with a retreat the weekend before and two years of preparation at the church. He really thought about it and questioned what he needed to question. We hope and pray his choice will bear fruit for him throughout his life.
In May, Tony received his first Holy Communion. As usual, the sacrament was beautiful and we were delighted to see it. Five down, two to go! Bella will receive hers next Spring and Natalie the following year.
Earlier this month, Lindsey graduated from Sacred Heart School after 9 years there. She received a number of leadership, music and service awards, and we are very proud of her. She will go to Paraclete High School in the fall. Time does fly!
Julia recently moved up another level in gymnastics. As a new level 6 she gets to compete optional rather than compulsory routines, which means she can choose her own combinations of elements as well as her floor music. She just returned from a week at Woodward West camp in Tehachapi where she was able to master a number of new skills. I love watching her grow and excel in her chosen sport, and she is truly a joy to watch.
Also in the extreme sports category, Sam also was at Woodward West last week but in the scooter program. He is getting very good on his scooter and learned a back and front flip while he was there. I tried for awhile to get the video on here but failed completely. So, you will have to trust me, he is awesome!
On the cancer front, I have just started a new chemo regime to get back on top of the slow creep we have been experiencing of late. It is a good strategic move, but my body is not enjoying it as much as it could. I am now on a new combo for Her2+ specific cancer and am, for the first time, on Taxol which is not targeted and affects all rapidly dividing cells. I am almost to certain to lose my hair (again!) in the next week or so and am experiencing a decent amount of bone and muscle pain as well as fatigue. So it goes. If it works, it is worth it all.
Finally, we are taking our every-other year family vacation, courtesy of Jay's airline miles and hotel points, next week. 10 days in Hawaii (Kauai and Kona), nine people, totally free, flights, hotel and rental cars. This is our reward for Jay's near-constant travel. Speaking of that, he is in Israel this week and having a wonderful time exploring Nazareth and the surrounding areas when he is done with his work day.
Hope all is well with you all and that your summer is blessed with all good things!
Thursday, May 15, 2014
News from the Front
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.
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.
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
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