I know you love these...
During the 45 minutes I spent getting a massive dreadlock out of the bottom (most sensitive) layer of 6 year old Bella's hair this afternoon, she was inquiring about my progress. I explained that I had sectioned it to make it easier to get through, but that now we were working on the nasty, snarling beast of all the sections. So she says...
"You mean the teenager one?"
Priceless.. right?!
As an added bonus, I have a keen observation from the teenage realm to share as well. After several friends spent the night this weekend, Lindsey proclaimed, "Things have really changed. When my friends came over before they used to say, "What do you want to do?" but now the first thing they say is, "What's your Wi-Fi password?""
I love my kids.
Oh, and by the way, I love my husband too. Happy anniversary, Jay (yesterday)! 18 years and still the best decision I ever dragged you into!
Tuesday, July 02, 2013
Friday, June 21, 2013
Theology Class
Greetings from the general area of Culpeper, Virginia! I am on a six day workshop at the beautiful Longlea Conference Center in a land of moist green hills, rivers and, yes, giant bugs. This desert dweller is not used to any of these things and has passed many a night here staring in fascination at the fireflies glowing off and on outside of her windows. Seriously, I have never seen fireflies before outside of "Pirates of the Caribbean"and I find them absolutely fascinating.
I am quite lucky to be receiving a moral theology course from a fantastic and brilliant priest, in fact, the same priest who taught me theology a year ago outside of Boston. As my head is much clearer this year, I am in a better place to absorb these big ideas that are so important to truly understanding Catholic teaching.
This is the back view of the house where most of the activities take place. A great environment to find peace and understanding, don't you agree?
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And this is the view from those steps you see:
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I am quite lucky to be receiving a moral theology course from a fantastic and brilliant priest, in fact, the same priest who taught me theology a year ago outside of Boston. As my head is much clearer this year, I am in a better place to absorb these big ideas that are so important to truly understanding Catholic teaching.
This is the back view of the house where most of the activities take place. A great environment to find peace and understanding, don't you agree?
.JPG)
And this is the view from those steps you see:
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And have I mention the food? Three beautifully prepared, delicious and perfectly presented meals each day make this a busy mom's heaven on earth. The joy of being so nicely cared for reminds me to care for my own family better.
It would be enough to come for the surroundings, but that is not even close to the best part. The truly amazing 21 women I have met here, the things I have learned about our faith and how I can apply them to my life, and the encouragement I have received to continue in my swim upstream in today's cultural river are the real treat. I would be lost without the spiritual formation I receive from Opus Dei.
I have reached a point with my illness where it is no longer the overwhelming drama it once was. It has gradually taken its place as just another one of the various characteristics that make me who I am: wife to the best husband ever, mother of seven, likes to sing, dabbles in blogging, living with cancer, has a giant dog, enjoys cookies...and so on. This is a blessing indeed.
So now that my spiritual life is tuned up and my health is improving, my next challenge is exercise. Sigh. Even when I was perfectly healthy, I avoided it at all costs. Nevertheless, my doctor, who has been right about everything so far, seems to think it is important that I introduce myself to it. Something about healthy cells and rehabilitation, energy and cognitive function, blah, blah, blah. Redouble your prayers, people, because I'm gonna need them if I have any chance at succeeding in this endeavor.
Tomorrow I leave this little slice of heaven and fly home, refreshed and determined anew in my vocation as wife and mother, to my true treasure on earth: my family and friends.
Saturday, May 25, 2013
An Apparent Rarity
At the end of April I put Sam in a new school. I know it seems a little crazy to make a switch so late in the year, but he was not thriving where he was and I didn't see the point in prolonging it until the end of the year.
Good decision.
In the last few weeks my old Sam, who had been replaced by an angry, sullen version of his former self, has returned. He is smiling, happy, enthusiastic again (of course not all the time, but much more generally). While he may never love school with all his heart, he has now found things about it to embrace. A change of scenery was just what he needed.
This is a good reminder to me that schooling the children has to be an 'every child every year' decision. It is not about what is easiest for me (one school), but rather what the children's individual needs are. It would be my preference to have all my children in Catholic school from Kinder through 12th, but alas, I am forever learning that my preference is not always the best way. And that is a good thing, as it keeps me open to the inspirations of the Holy Spirit in my life.
As many of you know, Jay and I have been all over the board educationally (no pun intended). When Joey was not succeeding in Catholic school I home schooled him for two years. When that was not academically successful (though it was key in rebuilding his confidence, which was the most important objective at the time) he moved to public school. There he stayed until this year when he went to Paraclete Catholic High School and fit in perfectly. I couldn't have predicted that path when I saw him off to his first day of Kinderarten 10 years ago, but it was right for him.
Tony, with a summer birthday, spent one year of Kinder at the local public school (which, blessedly, is excellent) and then went on to repeat Kinder at our Catholic school. Natalie will do the same, beginning this fall, as she has a December birthday. I opted for Transitional Kindergarten rather than another year of preschool as I believe she is ready.
Now Sam has transitioned to public school which is a better fit for his way of learning. Julia, too, will be giving public school a go next year as a fifth grader. Yet, Lindsey will graduate from Catholic school next year having been happily rooted in her class of 36 students from Kinder through 8th. Tony and Bella also continue in Catholic school. To sum this up, next year I will have seven children in four schools, two Catholic and two public. Yikes! Yet, though I may go broke from driving them all over the valley, I am confident it is right thing for each of their individual needs and that, as a result, our home will be a more peaceful and happy one.
This was all clarified for me yesterday when I dropped Sam off at school. His school has a wonderful greeter who opens the car door for the kids and makes sure they get in the gate safely. She is always cheerful and wears funny hats on holidays, and it has become a highlight of our day to see what she will be wearing or say when we drop off. As Sam got out of the car she stuck her head in the car and said, "What a pleasure it is to see both of you smiling and talking together when you pull up. You'd be surprised how many people seem angry when they drop off their children." That stopped me for a few reasons.
First, I realized how wonderful it is to have Sam back to his old self. That is exactly what we were doing, talking and laughing, and it had been awhile since that had happened so naturally given how unhappy he had been for so long. It validated the decision I had made in an instant.
Second, I was struck by how sad it was that this merited a comment at all. How many carry that attitude throughout their day? How many times have I used our drives to lecture the children on what they need to do better that day rather that setting a positive tone for their day? It made me much more aware that my attitude in the morning can set the tone for the days of eight other people. How important it is for me to be cheerful!
Thank you, Mrs. Wyatt of Valley View school, for your observation, which has enlightened me this day.
Good decision.
In the last few weeks my old Sam, who had been replaced by an angry, sullen version of his former self, has returned. He is smiling, happy, enthusiastic again (of course not all the time, but much more generally). While he may never love school with all his heart, he has now found things about it to embrace. A change of scenery was just what he needed.
This is a good reminder to me that schooling the children has to be an 'every child every year' decision. It is not about what is easiest for me (one school), but rather what the children's individual needs are. It would be my preference to have all my children in Catholic school from Kinder through 12th, but alas, I am forever learning that my preference is not always the best way. And that is a good thing, as it keeps me open to the inspirations of the Holy Spirit in my life.
As many of you know, Jay and I have been all over the board educationally (no pun intended). When Joey was not succeeding in Catholic school I home schooled him for two years. When that was not academically successful (though it was key in rebuilding his confidence, which was the most important objective at the time) he moved to public school. There he stayed until this year when he went to Paraclete Catholic High School and fit in perfectly. I couldn't have predicted that path when I saw him off to his first day of Kinderarten 10 years ago, but it was right for him.
Tony, with a summer birthday, spent one year of Kinder at the local public school (which, blessedly, is excellent) and then went on to repeat Kinder at our Catholic school. Natalie will do the same, beginning this fall, as she has a December birthday. I opted for Transitional Kindergarten rather than another year of preschool as I believe she is ready.
Now Sam has transitioned to public school which is a better fit for his way of learning. Julia, too, will be giving public school a go next year as a fifth grader. Yet, Lindsey will graduate from Catholic school next year having been happily rooted in her class of 36 students from Kinder through 8th. Tony and Bella also continue in Catholic school. To sum this up, next year I will have seven children in four schools, two Catholic and two public. Yikes! Yet, though I may go broke from driving them all over the valley, I am confident it is right thing for each of their individual needs and that, as a result, our home will be a more peaceful and happy one.
This was all clarified for me yesterday when I dropped Sam off at school. His school has a wonderful greeter who opens the car door for the kids and makes sure they get in the gate safely. She is always cheerful and wears funny hats on holidays, and it has become a highlight of our day to see what she will be wearing or say when we drop off. As Sam got out of the car she stuck her head in the car and said, "What a pleasure it is to see both of you smiling and talking together when you pull up. You'd be surprised how many people seem angry when they drop off their children." That stopped me for a few reasons.
First, I realized how wonderful it is to have Sam back to his old self. That is exactly what we were doing, talking and laughing, and it had been awhile since that had happened so naturally given how unhappy he had been for so long. It validated the decision I had made in an instant.
Second, I was struck by how sad it was that this merited a comment at all. How many carry that attitude throughout their day? How many times have I used our drives to lecture the children on what they need to do better that day rather that setting a positive tone for their day? It made me much more aware that my attitude in the morning can set the tone for the days of eight other people. How important it is for me to be cheerful!
Thank you, Mrs. Wyatt of Valley View school, for your observation, which has enlightened me this day.
Thursday, May 09, 2013
Proud Mom
Julia and two friends in her class performed a talent show preview for their school this morning. I loved it and thought they did a great job. If you'd like to see it, this link should (hopefully) take you to the two minute video. Thanks to their gymnastics coach, Daniel of Genesis Gymnastics, for the great choreography!
(For those who are not sure, Julia is the one in blue shorts.)
(For those who are not sure, Julia is the one in blue shorts.)
Saturday, May 04, 2013
Objectified
Yesterday evening Jay and I were cherishing some quiet time in our room. We asked the kids for 30 whole minutes, something of a luxury for us. Although I'm ashamed to admit how boring I really am, I used this precious time to take a nap, while Jay caught up on some prayers.
Every few minutes we were systematically interrupted by a tapping on the door. "Mommy?" a little voice would ask each time. Jay would kindly respond to each tap, "Mommy is not available right now, please come back in X number of minutes (however much of our half hour was left). The taps continued at 5-10 minute intervals.
With about 10 minutes to go, Natalie had had her fill of the gentle rebuffs. She changed her tactic: "Dad, can I use mommy for a few minutes?"
We both laughed hard at that. Jay comment that our four year old daughter had just completely objectified me and we found it funny. Where is my Christian dignity? On vacation sometimes where my children are concerned. Go ahead--use me! That's what I'm here for.
Every few minutes we were systematically interrupted by a tapping on the door. "Mommy?" a little voice would ask each time. Jay would kindly respond to each tap, "Mommy is not available right now, please come back in X number of minutes (however much of our half hour was left). The taps continued at 5-10 minute intervals.
With about 10 minutes to go, Natalie had had her fill of the gentle rebuffs. She changed her tactic: "Dad, can I use mommy for a few minutes?"
We both laughed hard at that. Jay comment that our four year old daughter had just completely objectified me and we found it funny. Where is my Christian dignity? On vacation sometimes where my children are concerned. Go ahead--use me! That's what I'm here for.
Saturday, April 27, 2013
Scantastic!
As I mentioned at the end of my last post, I had a good brain scan last week that showed the two remaining lesions in my brain have shrunk "slightly". After becoming happily accustomed to "stable", this was a complete thrill for us. I mention this news again since I am thinking the majority of you never made it to the end of my last way-too-long post to read that news.
Now I have the news of my whole body PET/CT scan to add to this. It was the best scan I have had in a very long time. The long and slow march of cancer through my bones has finally been halted and mostly reversed. All the activity in my sacrum and ribs has stopped completely and is showing increased sclerosis, a hardening of the bone lesions which is usually indicative of healing. The only active bone lesions remaining are in my femur and T9 vertabrae. Four months ago the SUV (measure of activity) was 6.0 in the T9 and is now1.7. It was 5.5 in my femur and is now 2.3. This is amazing news!
My oncologist decided to get aggressive with things after my last scan showed continuing progression in the bones. I began taking two new medications: Xgeva, which is an injection specific to bones, and Xeloda, which is a twice daily oral chemo one week on and one week off. Both of these have some very unpleasant side effects, but with results like these, I am newly pleased to continue taking them.
All my soft tissue organs are totally clear, as they have been since I completed my course of TDM1 (now approved by the FDA!!!) in summer of 2011.
Of course you all know I attribute this as much to answered prayers as to medical intervention. Given that the whole time Jay has been asking for "a miraculous or medical cure", they have become one and the same for us. This is the closest I have been to NED (no evidence of disease) in awhile, certainly since the brain mets popped up in 2011. I thank you so very much for your continued support and prayers!
Now I have the news of my whole body PET/CT scan to add to this. It was the best scan I have had in a very long time. The long and slow march of cancer through my bones has finally been halted and mostly reversed. All the activity in my sacrum and ribs has stopped completely and is showing increased sclerosis, a hardening of the bone lesions which is usually indicative of healing. The only active bone lesions remaining are in my femur and T9 vertabrae. Four months ago the SUV (measure of activity) was 6.0 in the T9 and is now1.7. It was 5.5 in my femur and is now 2.3. This is amazing news!
My oncologist decided to get aggressive with things after my last scan showed continuing progression in the bones. I began taking two new medications: Xgeva, which is an injection specific to bones, and Xeloda, which is a twice daily oral chemo one week on and one week off. Both of these have some very unpleasant side effects, but with results like these, I am newly pleased to continue taking them.
All my soft tissue organs are totally clear, as they have been since I completed my course of TDM1 (now approved by the FDA!!!) in summer of 2011.
Of course you all know I attribute this as much to answered prayers as to medical intervention. Given that the whole time Jay has been asking for "a miraculous or medical cure", they have become one and the same for us. This is the closest I have been to NED (no evidence of disease) in awhile, certainly since the brain mets popped up in 2011. I thank you so very much for your continued support and prayers!
Sunday, April 21, 2013
Roam Sweet Home
It may seem like a long time since I've updated my blog (and it has been, sorry!), but I have been all over the place. Literally!
Shortly after my last post I got into Easter preparations which, for a cantor and choir member are extensive. Singing for stations of the cross, Palm Sunday, Holy Thursday, Good Friday Veneration, Easter Vigil and Easter Sunday kept me quite busy. I spent close to as much time at church than I did at home for a good week! And that was a good thing for me, as I so love to sing to our Lord. We ended the flurry with a lovely, peaceful family Easter at home.
Then the real activity began. The day after Easter I went down to Cedars-Sinai for my regular treatment. After treatment I stayed in Los Angeles, killing time by experimenting with city bus routes (first time on a bus in more than 20 years...the fare went up!) until I found my way to the Grove. I had some lunch, went to a movie and waited for my boys to arrive so we could go to the airport.
Soon enough we were on our way to Orlando. It had been awhile since I had spent good quality time with Joey (14) and Sam (11), so it was really nice to travel just the three of us. When we arrived at 5am (ugh) after a flight where I was sandwiched between the boys (who had boundless energy to poke each other repeatedly over my not-resting-but-should-have-been body), we drove to Cocoa Beach on the East Coast of Florida. They boys went straight to the beach while I happened upon a daily mass beginning right then directly across the street. Divine intervention? I think so.
After spending a very sandy day at a beautiful beach (perfect for my skimboarding boys) we checked into our hotel and tried to catch up on our sleep.
The next day we went to the Kennedy Space Center. It exceeded all of our expectations. The boys were of the mind that they would rather have an extra day at Disneyland, but when we finished our tour they both agreed that it was more than worth the detour. It would have been the perfect day had I not listened to "Siri" who directed me away from all of the signs pointing me to the space center and instead delivered us 20 minutes away to an employee back gate. Of course we had to go all the way back around, but we did see some amazing (and eerily close) Crocodiles and a pretty impressive Bald Eagle Nest, so not all was lost.
I was pretty done by the end of the day, but as fate would have it, Universal Studios was having a Buy 2 Get 1 Free sale when we bought our park tickets. The boys suggested we drive into Orlando--at 6pm--and use the free extra day (that would otherwise be wasted) for the few hours remaining until closing. Since I was feeling surprisingly well, I agreed, and we had a good time getting a preview of the Island of Adventure park that we had never been to before. We concentrated particularly on the Wizarding World Harry Potter which was a lot of fun for a family that has enjoyed the books and seen the movies, but it was really crowded so we didn't do much. On our way out of the park we got hit by a major rainstorm and were soaked to the bone by the time we got to the car. First item of business the next morning when we got to Epcot Center? You got it, Mickey Mouse rain ponchos! Rain had never occurred to us, being desert dwellers, but since it was so warm it was more fun than miserable.
The next day we moved to our hotel in Orlando, and from there the day was all Disney. Epcot with early dinner in Japan, Disney Studios in the late afternoon into evening and The Magic Kingdom until 12:30am. I don't know where I got the energy, but we had so much fun! (As an aside, the doctor I mentioned forgetting in my last blog is a Rehabilitation and Survivorship doctor and has already made some really positive changes in my overall quality of life--more about that in a different post, but the changes were evident in all that I was able to do on this trip).
The following day was Universal, the original park. That was the day I hit the wall. As you may recall, I take an oral chemo one week on, one week off. I had started my week on two days prior and it always hits me on the third day. I pretty much got the kids in the gate, gave them some money and made sure everyone's phone was working and went back to the parking garage and took a long nap. It was during this nap that I came to understand that most people locate their cars by pressing the panic buttons on their remotes. Not the best nap I've ever had, but so needed that it was truly blissful anyway. I met the kids back in the park, still not 100%, and made sure they had dinner after which I stayed put and said my daily prayers in the booth of a cafe, simply happy to be stationary. We finally made it back to the car at 10pm where I traumatized the boys by having to stop the car and throw up. But, what can you do?
Happily, our hotel was very close to the shrine Mary Queen of the Universe. We go there every time we are in Orlando, and this time was no exception. While the boys slept, I would sneak out to morning mass and come back ready for another day. The Eucharist was most definitely the source of my remarkable strength on this whirlwind trip (and always is, for that matter). The church is gorgeous and has a very large gift shop. The Sunday morning mass featured two cantors backed by 4 or 5 other singers that were so pure and beautiful that I nearly wept with joy. We saw Red-Ear Slider turtles swimming in the pond and watched them for a awhile after mass, as Joey has two in a tank in his room.
At about this point in the trip, an amazing thing started to happen. My too-big-to-hug-mom-when-anyone-is-looking sons started spontaneously hugging me and saying things like, "I love you mom" and "Wow, I'm feeling really spoiled with all of this" and "Thank you so much for all we are doing, we are having so much fun!" They were perfect gentleman and let me hold on to them when I had trouble balancing in the dark. They previewed rides for me to see if they were too rough for my poor brain, and even when I gave them license to run they stayed fairly close and really wanted me to do whatever they were doing. I was somewhat reluctant to go on this trip because of the physical strain it would cause me but now I know I wouldn't have missed it for the world. It came about because my mother in law planned to take them but injured her knee. She was kind enough to change the reservation to my name so the boys would not be disappointed. It turned out to be such a nice time with my older boys and I am very grateful I had the time with them. I will never forget it.
One more mega-Disney day and another Universal day and we were back home very late Sunday night, exhausted (well, at least I was). I needed a vacation to recover from my vacation, and lucky for me I got one! I had long before scheduled my annual retreat for the following weekend, before the Florida trip came up for me. So, feeling a little guilty about leaving my little ones (who actually seem to miss me when I'm gone) again so soon, I drove with friends up to beautiful Trumbull Manor in Novato for a long weekend of (mostly) silent prayer and reflection.
This retreat was hands-down the best I have ever been on, for several reasons. First, four friends came with me and I was so happy to see how they responded to the retreat. Second, a priest I know and greatly respect but have not seen in a few years gave the retreat. It was such a pleasure to talk with him and hear his reflections after so much time. He gave me spiritual direction when I was first diagnosed with cancer and was a large part of the reason my faith strengthened during that time.
Third, the director of the retreat was the very same woman, who I have only met once before, that let me in to the Westfield Residence (an Opus Dei center) at UCLA the day I learned the cancer was in my liver and I was stage IV. She was the first person I saw after I received the news, and she let me into the oratory to pray in front of the blessed sacrament. She then gave me Don Alvaro's prayer card and thus began my prayers for his intercession (see November 2009 blogs for the beginnings of this). I couldn't believe it when we recognized each other right away from that one-time meeting but she, also, was instrumental in getting me through that very difficult diagnosis with a cheerful and hopeful heart. When I was done crying she gave me tea and cake and listened to me when I really needed it. It's no wonder I found a vocation to this wonderful Work of God with examples like them to guide me there.
Last but not least, I somehow managed to stay more silent than usual during this retreat. I do an awful lot of talking to God, but not nearly enough listening. I found that when I settled down enough to really listen, that he had many helpful things to tell me. Many things were clarified for me that I could not see before, and I have a deep peace as a result of that weekend. I am truly blessed indeed.
If you are still reading this long tale, I have saved the best news for last. I got the results of my recent brain scan on Friday. For the first time in many scans, the two remaining lesions in my brain have both shrunk "slightly". I have been happy with "stable" for awhile, so I am beyond thrilled with shrinkage, no matter how slight it is! Stay tuned for Tuesday results of my first whole body PET/CT in four months...we will see if we have stopped the march of cancer across my bones with the addition of the not-so-fun Xeloda. It would be nice to know it is worth the discomfort!
Sorry this grew into the blog that ate Manhattan, but I had so much to talk about. I guess that happens when you don't blog for six weeks. Thanks for continuing to read!
Shortly after my last post I got into Easter preparations which, for a cantor and choir member are extensive. Singing for stations of the cross, Palm Sunday, Holy Thursday, Good Friday Veneration, Easter Vigil and Easter Sunday kept me quite busy. I spent close to as much time at church than I did at home for a good week! And that was a good thing for me, as I so love to sing to our Lord. We ended the flurry with a lovely, peaceful family Easter at home.
Then the real activity began. The day after Easter I went down to Cedars-Sinai for my regular treatment. After treatment I stayed in Los Angeles, killing time by experimenting with city bus routes (first time on a bus in more than 20 years...the fare went up!) until I found my way to the Grove. I had some lunch, went to a movie and waited for my boys to arrive so we could go to the airport.
Soon enough we were on our way to Orlando. It had been awhile since I had spent good quality time with Joey (14) and Sam (11), so it was really nice to travel just the three of us. When we arrived at 5am (ugh) after a flight where I was sandwiched between the boys (who had boundless energy to poke each other repeatedly over my not-resting-but-should-have-been body), we drove to Cocoa Beach on the East Coast of Florida. They boys went straight to the beach while I happened upon a daily mass beginning right then directly across the street. Divine intervention? I think so.
After spending a very sandy day at a beautiful beach (perfect for my skimboarding boys) we checked into our hotel and tried to catch up on our sleep.
The next day we went to the Kennedy Space Center. It exceeded all of our expectations. The boys were of the mind that they would rather have an extra day at Disneyland, but when we finished our tour they both agreed that it was more than worth the detour. It would have been the perfect day had I not listened to "Siri" who directed me away from all of the signs pointing me to the space center and instead delivered us 20 minutes away to an employee back gate. Of course we had to go all the way back around, but we did see some amazing (and eerily close) Crocodiles and a pretty impressive Bald Eagle Nest, so not all was lost.
I was pretty done by the end of the day, but as fate would have it, Universal Studios was having a Buy 2 Get 1 Free sale when we bought our park tickets. The boys suggested we drive into Orlando--at 6pm--and use the free extra day (that would otherwise be wasted) for the few hours remaining until closing. Since I was feeling surprisingly well, I agreed, and we had a good time getting a preview of the Island of Adventure park that we had never been to before. We concentrated particularly on the Wizarding World Harry Potter which was a lot of fun for a family that has enjoyed the books and seen the movies, but it was really crowded so we didn't do much. On our way out of the park we got hit by a major rainstorm and were soaked to the bone by the time we got to the car. First item of business the next morning when we got to Epcot Center? You got it, Mickey Mouse rain ponchos! Rain had never occurred to us, being desert dwellers, but since it was so warm it was more fun than miserable.
The next day we moved to our hotel in Orlando, and from there the day was all Disney. Epcot with early dinner in Japan, Disney Studios in the late afternoon into evening and The Magic Kingdom until 12:30am. I don't know where I got the energy, but we had so much fun! (As an aside, the doctor I mentioned forgetting in my last blog is a Rehabilitation and Survivorship doctor and has already made some really positive changes in my overall quality of life--more about that in a different post, but the changes were evident in all that I was able to do on this trip).
The following day was Universal, the original park. That was the day I hit the wall. As you may recall, I take an oral chemo one week on, one week off. I had started my week on two days prior and it always hits me on the third day. I pretty much got the kids in the gate, gave them some money and made sure everyone's phone was working and went back to the parking garage and took a long nap. It was during this nap that I came to understand that most people locate their cars by pressing the panic buttons on their remotes. Not the best nap I've ever had, but so needed that it was truly blissful anyway. I met the kids back in the park, still not 100%, and made sure they had dinner after which I stayed put and said my daily prayers in the booth of a cafe, simply happy to be stationary. We finally made it back to the car at 10pm where I traumatized the boys by having to stop the car and throw up. But, what can you do?
Happily, our hotel was very close to the shrine Mary Queen of the Universe. We go there every time we are in Orlando, and this time was no exception. While the boys slept, I would sneak out to morning mass and come back ready for another day. The Eucharist was most definitely the source of my remarkable strength on this whirlwind trip (and always is, for that matter). The church is gorgeous and has a very large gift shop. The Sunday morning mass featured two cantors backed by 4 or 5 other singers that were so pure and beautiful that I nearly wept with joy. We saw Red-Ear Slider turtles swimming in the pond and watched them for a awhile after mass, as Joey has two in a tank in his room.
At about this point in the trip, an amazing thing started to happen. My too-big-to-hug-mom-when-anyone-is-looking sons started spontaneously hugging me and saying things like, "I love you mom" and "Wow, I'm feeling really spoiled with all of this" and "Thank you so much for all we are doing, we are having so much fun!" They were perfect gentleman and let me hold on to them when I had trouble balancing in the dark. They previewed rides for me to see if they were too rough for my poor brain, and even when I gave them license to run they stayed fairly close and really wanted me to do whatever they were doing. I was somewhat reluctant to go on this trip because of the physical strain it would cause me but now I know I wouldn't have missed it for the world. It came about because my mother in law planned to take them but injured her knee. She was kind enough to change the reservation to my name so the boys would not be disappointed. It turned out to be such a nice time with my older boys and I am very grateful I had the time with them. I will never forget it.
One more mega-Disney day and another Universal day and we were back home very late Sunday night, exhausted (well, at least I was). I needed a vacation to recover from my vacation, and lucky for me I got one! I had long before scheduled my annual retreat for the following weekend, before the Florida trip came up for me. So, feeling a little guilty about leaving my little ones (who actually seem to miss me when I'm gone) again so soon, I drove with friends up to beautiful Trumbull Manor in Novato for a long weekend of (mostly) silent prayer and reflection.
This retreat was hands-down the best I have ever been on, for several reasons. First, four friends came with me and I was so happy to see how they responded to the retreat. Second, a priest I know and greatly respect but have not seen in a few years gave the retreat. It was such a pleasure to talk with him and hear his reflections after so much time. He gave me spiritual direction when I was first diagnosed with cancer and was a large part of the reason my faith strengthened during that time.
Third, the director of the retreat was the very same woman, who I have only met once before, that let me in to the Westfield Residence (an Opus Dei center) at UCLA the day I learned the cancer was in my liver and I was stage IV. She was the first person I saw after I received the news, and she let me into the oratory to pray in front of the blessed sacrament. She then gave me Don Alvaro's prayer card and thus began my prayers for his intercession (see November 2009 blogs for the beginnings of this). I couldn't believe it when we recognized each other right away from that one-time meeting but she, also, was instrumental in getting me through that very difficult diagnosis with a cheerful and hopeful heart. When I was done crying she gave me tea and cake and listened to me when I really needed it. It's no wonder I found a vocation to this wonderful Work of God with examples like them to guide me there.
Last but not least, I somehow managed to stay more silent than usual during this retreat. I do an awful lot of talking to God, but not nearly enough listening. I found that when I settled down enough to really listen, that he had many helpful things to tell me. Many things were clarified for me that I could not see before, and I have a deep peace as a result of that weekend. I am truly blessed indeed.
If you are still reading this long tale, I have saved the best news for last. I got the results of my recent brain scan on Friday. For the first time in many scans, the two remaining lesions in my brain have both shrunk "slightly". I have been happy with "stable" for awhile, so I am beyond thrilled with shrinkage, no matter how slight it is! Stay tuned for Tuesday results of my first whole body PET/CT in four months...we will see if we have stopped the march of cancer across my bones with the addition of the not-so-fun Xeloda. It would be nice to know it is worth the discomfort!
Sorry this grew into the blog that ate Manhattan, but I had so much to talk about. I guess that happens when you don't blog for six weeks. Thanks for continuing to read!
Saturday, March 09, 2013
Perhaps She Has A Point
The last time I visited my oncologist, nearly three weeks ago, she was going through the usual questions about how I am feeling, what side effects I am experiencing, etc, etc. I told her the most troublesome thing to me was the short term memory loss that I have experienced since my brain radiation. I forget things almost instantly if I don't write them down. If I do manage to write them down I don't remember to look at the calendar. I am busy working on using my iPhone for reminders of important things (like when to pick up the kids and what night Sam has scouts) because I can't even remember to go to choir when it's Thursday--and you all know how much I love going to choir!
My long term memory is fine. I can remember things that happened years ago and my times tables and all that. I can still diagram sentences (thank goodness as I am recently in need of this skill again to help the kids with homework) and know how to find anything I need on the internet. Its really just things in the present and recent past. I can't remember if I took my medicine (hence, the pillbox), I can't remember if I ate lunch, I can't remember the details of a conversation I had with someone a few hours earlier even if something important was discussed. If I had a dollar for every time I went into the garage to get something and then stood and stared for long minutes while I tried to recall what it was I was looking for (or even what I had been doing) I would be doing quite well for myself.
So, as I explained this to my doctor, she recommended that I see a colleague of hers who is a specialist in this type of "cognitive disfunction" due to damage to the brain from radiation or other injuries. He may be able to give me some exercises or Ginko Biloba or something to help restore some of the lost brain cells. She said his office would call me.
About a week later I received a call from the doctor's office. I brilliantly said, "I'm sorry, WHO?" with no immediate recollection of the conversation. She went on to explain that she had received a referral from my oncologist for help with cognitive disfunction. I said, again demonstrating my great intelligence, "Oh, yeah! I totally forgot!" A little giggle from her and then I added, "I suppose you hear that from tons of your patients." She didn't comment on that, but it must be so. They almost certainly have more missed appointments than your average doctor. I can't wait to see how often they remind me of this appointment over the next few days!
So to those of you who tell me things that I immediately forget, and to those to whom I place frantic calls asking where or when someone's game/track meet/etc. is, thank you for bearing with me and helping me along. And please know that if you tell me something and I don't remember it, it is not because I don't care. I DO care, I just can't overcome the sagging brain. Hopefully this new doctor (if I make it to my appointment, of course) can help me!
Clearly, I am in need of his services.
My long term memory is fine. I can remember things that happened years ago and my times tables and all that. I can still diagram sentences (thank goodness as I am recently in need of this skill again to help the kids with homework) and know how to find anything I need on the internet. Its really just things in the present and recent past. I can't remember if I took my medicine (hence, the pillbox), I can't remember if I ate lunch, I can't remember the details of a conversation I had with someone a few hours earlier even if something important was discussed. If I had a dollar for every time I went into the garage to get something and then stood and stared for long minutes while I tried to recall what it was I was looking for (or even what I had been doing) I would be doing quite well for myself.
So, as I explained this to my doctor, she recommended that I see a colleague of hers who is a specialist in this type of "cognitive disfunction" due to damage to the brain from radiation or other injuries. He may be able to give me some exercises or Ginko Biloba or something to help restore some of the lost brain cells. She said his office would call me.
About a week later I received a call from the doctor's office. I brilliantly said, "I'm sorry, WHO?" with no immediate recollection of the conversation. She went on to explain that she had received a referral from my oncologist for help with cognitive disfunction. I said, again demonstrating my great intelligence, "Oh, yeah! I totally forgot!" A little giggle from her and then I added, "I suppose you hear that from tons of your patients." She didn't comment on that, but it must be so. They almost certainly have more missed appointments than your average doctor. I can't wait to see how often they remind me of this appointment over the next few days!
So to those of you who tell me things that I immediately forget, and to those to whom I place frantic calls asking where or when someone's game/track meet/etc. is, thank you for bearing with me and helping me along. And please know that if you tell me something and I don't remember it, it is not because I don't care. I DO care, I just can't overcome the sagging brain. Hopefully this new doctor (if I make it to my appointment, of course) can help me!
Clearly, I am in need of his services.
Sunday, February 17, 2013
Happenings
I'm not going to lie to you. Re-entry from our vacation was...well, a bit of a shock. However, now that I am settled and things are back to normal (if there is such a thing around here), I am plowing along, day by day, busy with our usual activities and with some unusual ones as well. It follows, then, that this will be a rambling post about this and that since so many things are happening in our family these days.
The kids are doing all kinds of things to keep themselves busy. Joey just got his letterman's jacket and we are so proud of him! This totally biased mom thinks he looks great, especially when pictured with his beaming dad sporting his own now-ancient jacket. Two generations of football, more to come I hope. I particularly like Joey's choice for the back of his jacket: "Saint Michael the Archangel, Defend us in Battle". He is rarely home as he goes to school at 6:15 for off-season football conditioning and stays until 5:30 for track practice. He is a sprinter as you may recall and is trying hurdles for the first time--I hear he's good and can't wait for his first meet.
In stark contrast, Lindsey, too, has realized her life's dream, as she finally has the hammock she has been wanting for some time. Jay and I brought it back from Costa Rica for her in her very favorite color. She is spending lots of time there reading and listening to music despite the still-wintery weather. She cantors often for school masses and I love to hear her sweet voice. She constantly amuses me with her lovable quirkiness.
Sam just returned from his first "Snow Camping" adventure with his Boy Scout troop. Here he is with all his gear, ready for his two mile hike in fresh powder at midnight. Not surprisingly, when asked how it was, his reply was, "Cold." Even so, he had a great time at the Klondike Derby shooting snow cannons (what the heck is a snow cannon anyway?!) and competing with other troops in all sorts of snowy events. He, unlike Joey, decided to continue on from Cub Scouts to Boy Scouts and is really enjoying all the activities his very busy troop provides for him to do. He is also playing basketball for the first time for Sacred Heart and loves it. Not being a basketball family, we are not sure where this came from, but we are happy for him!
Julia continues with her gymnastics and is a pleasure to watch. She will be competing new routines in some upcoming meets and I am looking forward to seeing how she has grown in her sport since the fall. Bella has begun taking gym classes too and is catching on quickly. I hope it isn't the end of her cheer career as she is such a great little cheerleader. However, gymnastics stole Julia from cheer and it may snatch Bella away as well. Bella will be turning six on Friday.
Toothless, Tiger Scout Tony is VERY BUSY playing Minecraft. This is a building game and I am absolutely stunned at the complicated and creative worlds he has created. Of course, I am thinking he is a budding architect and am happy to have at least one career decided upon for my children. Six more to go...
Natalie is my constant companion and a continual joy. I am treasuring this last year and a half of having her at home. I will be lost when she goes to school. (But maybe I'll get over it somehow.)
As for me, I fell off a ladder last week and banged my head pretty hard on the corner of a table on my way down. Luckily, I had a brain scan scheduled a few days later anyway, and the bump was on the opposite side of my Omaya, so we were able to see pretty quickly that all was well. Nonetheless, it hurt quite a bit and slowed me down considerably for a few days. I will be avoiding ladders from now on.
About that brain scan: Remarkably, I remain stable. Still have two metastatic spots, still not growing, shrinking or changing. Though I would prefer "clear" I am pretty happy with "stable". Chalk up another two months for me, hurray! God is good.
Finally, Jay and I are excited to be doing something totally out of the ordinary for us. We are going to the Costume Designer Guild Awards in Beverly Hills on Tuesday. My friend from high school, now a successful business owner, runs this show (among many other things) every year and she sent us tickets out of the blue for fun. I have a gown to wear (great sale at Macy's!) and Jay has his tux all ready to go. We are like little kids playing dress up...and maybe we'll even see some movie stars! Fun, fun fun.
This is starting to feel like the Christmas letter I never wrote...so I'll close with that. Rest assured that, though much time passes between posts at times, that I am well. Thanks for reading.
The kids are doing all kinds of things to keep themselves busy. Joey just got his letterman's jacket and we are so proud of him! This totally biased mom thinks he looks great, especially when pictured with his beaming dad sporting his own now-ancient jacket. Two generations of football, more to come I hope. I particularly like Joey's choice for the back of his jacket: "Saint Michael the Archangel, Defend us in Battle". He is rarely home as he goes to school at 6:15 for off-season football conditioning and stays until 5:30 for track practice. He is a sprinter as you may recall and is trying hurdles for the first time--I hear he's good and can't wait for his first meet.
In stark contrast, Lindsey, too, has realized her life's dream, as she finally has the hammock she has been wanting for some time. Jay and I brought it back from Costa Rica for her in her very favorite color. She is spending lots of time there reading and listening to music despite the still-wintery weather. She cantors often for school masses and I love to hear her sweet voice. She constantly amuses me with her lovable quirkiness.
Julia continues with her gymnastics and is a pleasure to watch. She will be competing new routines in some upcoming meets and I am looking forward to seeing how she has grown in her sport since the fall. Bella has begun taking gym classes too and is catching on quickly. I hope it isn't the end of her cheer career as she is such a great little cheerleader. However, gymnastics stole Julia from cheer and it may snatch Bella away as well. Bella will be turning six on Friday.
Toothless, Tiger Scout Tony is VERY BUSY playing Minecraft. This is a building game and I am absolutely stunned at the complicated and creative worlds he has created. Of course, I am thinking he is a budding architect and am happy to have at least one career decided upon for my children. Six more to go...
Natalie is my constant companion and a continual joy. I am treasuring this last year and a half of having her at home. I will be lost when she goes to school. (But maybe I'll get over it somehow.)
As for me, I fell off a ladder last week and banged my head pretty hard on the corner of a table on my way down. Luckily, I had a brain scan scheduled a few days later anyway, and the bump was on the opposite side of my Omaya, so we were able to see pretty quickly that all was well. Nonetheless, it hurt quite a bit and slowed me down considerably for a few days. I will be avoiding ladders from now on.
About that brain scan: Remarkably, I remain stable. Still have two metastatic spots, still not growing, shrinking or changing. Though I would prefer "clear" I am pretty happy with "stable". Chalk up another two months for me, hurray! God is good.
Finally, Jay and I are excited to be doing something totally out of the ordinary for us. We are going to the Costume Designer Guild Awards in Beverly Hills on Tuesday. My friend from high school, now a successful business owner, runs this show (among many other things) every year and she sent us tickets out of the blue for fun. I have a gown to wear (great sale at Macy's!) and Jay has his tux all ready to go. We are like little kids playing dress up...and maybe we'll even see some movie stars! Fun, fun fun.
This is starting to feel like the Christmas letter I never wrote...so I'll close with that. Rest assured that, though much time passes between posts at times, that I am well. Thanks for reading.
Saturday, February 02, 2013
Greetings from Costa Rica!
Costa Rica was not on my list of places to visit. Yet, here we are and I have no idea why it wasn't! This place is beyond amazing. It is lush like Kauai (my favorite place on earth) with a rainbow of bright flowers and birds of every color and size. We are staying in a beautiful hotel with a very close view of the volcano Arenal and geothermal hot springs feeding into little pools all down the hill by our room. Every few hours when it is just starting to feel a little warm, it dumps rain for about five minutes and then the blue sky shines through again. This is truly paradise.
I am finding this country, a republic, to be very well run and efficient. I see the poverty of the tin roofed-cardboard sided clusters of shelters but I also see a refined and welcoming people, busy in their various industries and kind to Americans (not always the case as we are collectively known as obnoxious and entitled travelers in many places I have been).
We are here, along with roughly 90 others, as guests of one of the founders of Vivisimo, the company for which Jay has worked for five years. Vivisimo was recently sold to IBM and a lot of money was made in the deal. Our benefactor set aside a percent of his earnings and offered this complete 6-day vacation to all of the employees that made the company the gem that attracted IBM. See, chivalry is not dead everywhere!
Today we went on a river tour where we saw howler monkeys, white-faced monkeys, turtles, both the two and the three-toed sloth, and lots of caiman (a variety of gator/crocodile that I had never heard of before today). We had a delicious "typical lunch" of black beans, rice and chicken with fresh pineapple ripened to the peak of sweetness in a nearby field. I learned that Costa Rica exports sugar, teakwood, oranges and pineapples, from this side of the country. Who knows what else we will find when we move to the other side in a few days.
Tomorrow we plan to go to mass in a little church on the town square in La Fortuna and then go zip lining, hurrying back, naturally, to watch the 49ers win the Super Bowl. I am so happy I am here with my wonderful husband, and I am confident that my kids are being well-cared for by people who love them at home. There are a few pretty cute kids on this trip and I am flipping between relief that mine are not here and sadness that they aren't. I'm pretty sure the relief is going to win out, though. At least for awhile, anyway!
Our river boat ride took us very close to the border of Nicaragua and we saw boats of people who commute down the river to work in Costa Rica and return to their homes in Nicaragua. Our guide told us the unemployment rate in Nicaragua is 50%, far higher than that in Costa Rica.
Here are some pictures Jay took today--ain't technology great?
My initial amazement at our accommodations:
The "Jesus Christ Lizard" named so for its ability to walk on water:
Howler Monkeys swinging through the trees alongside the river:
Bird drying its wings in the sun after a fishing trip:
Rather large iguana:
Caiman regulating his body temperature...unsure why mouth is required to be open during the process:
The view from the sitting area in our room:
We are most certainly lucky ducks.
Tuesday, January 29, 2013
A Question from Natalie
"Why am I last?" mourned Natalie about her position in the family.
"That's the way God planned it," I answered.
"Well, then. Why can't I be God?" she demanded.
Why not?! That was a question I had never myself considered. A question only Natalie could ask. I tried to give her a good answer, really I did. But how can I explain in preschool terms the everlasting nature of God, how he created her out of love to be exactly the person she is supposed to be? At 7am, I just stuttered unintelligently By the time I had an idea of what I was going to say, she was gone, off to the next thing.
Apparently, we have quite a bit of catechism and apologetics still to get through...for both of us!
"That's the way God planned it," I answered.
"Well, then. Why can't I be God?" she demanded.
Why not?! That was a question I had never myself considered. A question only Natalie could ask. I tried to give her a good answer, really I did. But how can I explain in preschool terms the everlasting nature of God, how he created her out of love to be exactly the person she is supposed to be? At 7am, I just stuttered unintelligently By the time I had an idea of what I was going to say, she was gone, off to the next thing.
Apparently, we have quite a bit of catechism and apologetics still to get through...for both of us!
Thursday, January 17, 2013
Op Ed: Share Bears
Since I have a blog, I have this great opportunity to express my opinion about anything I want, even something so ridiculous that you will likely stop reading by the second paragraph. However, as this has been a constant irritation to me for years with no end in sight (although the end is getting closer), I thought I'd subject you all to my opinion on the subject of....drum roll please...shared stuffed animals.
What is this, you ask? It is a teddy bear or a puppy or anything cute that goes home with your child who is in a preschool class, a daisy troop or other organized group for young children. It usually comes in a backpack with a binder and a few accessories, and your child brings it home for a weekend or a week or whatever period of time is appropriate for the organization.
As the "lucky" recipient of the coveted backpack, you get to take pictures with your "friend" and put together a collage and commentary on what you did together and how much fun you had sharing this special time together. You add your page to the binder when you return the friend and the backpack, and then it goes to the next child.
Don't get me wrong, I am not heartless. I think it is a sweet idea that could unite a group in a fun way. Nor do I have any heebee geebies about sanitary issues and the sharing of germs between houses. For goodness sake, I have seven children and a big stinky dog, not to mention the cat and the turtles, so I already live in a menagerie of germs, no matter how often we disinfect. (Tangent...it must be true that the more you let your kids play in the dirt the healthier their immune systems become as my kids are rarely sick, thanks be to God.)
However, as soon as I see one of those backpacks coming home with one of my kids, my stress level goes sky high. Why? Because I become responsible for keeping that friend out of the dogs mouth, away from the swimming pool, and away from food of all kinds. I have to keep track of any accessories that came with it and live in a constant state of terror that we are going to lose or break something. The kids, completely delighted with their special friend, carry it all over the place and I have to trail behind them like the guy behind the elephants at the circus to be sure we don't spoil it for the other kids. This is no small task and I am constantly on guard the entire time the friend is visiting.
As a bonus, I get to look at all the nice pages other parents did for their children while I frantically snap some photos the last day we have the friend, sometimes making the child change clothes so it appears that we did it all along instead of all at once at the end. Then I have to caption these photos in a way that makes the whole visit seem like it was a little taste of heaven.
No, I am not a fan of the share bears. But, I endure what I must for the delight of my children. Sigh.
(If you are still reading, I commend you and thank you--it feels great to get that off my chest.)
What is this, you ask? It is a teddy bear or a puppy or anything cute that goes home with your child who is in a preschool class, a daisy troop or other organized group for young children. It usually comes in a backpack with a binder and a few accessories, and your child brings it home for a weekend or a week or whatever period of time is appropriate for the organization.
As the "lucky" recipient of the coveted backpack, you get to take pictures with your "friend" and put together a collage and commentary on what you did together and how much fun you had sharing this special time together. You add your page to the binder when you return the friend and the backpack, and then it goes to the next child.
Don't get me wrong, I am not heartless. I think it is a sweet idea that could unite a group in a fun way. Nor do I have any heebee geebies about sanitary issues and the sharing of germs between houses. For goodness sake, I have seven children and a big stinky dog, not to mention the cat and the turtles, so I already live in a menagerie of germs, no matter how often we disinfect. (Tangent...it must be true that the more you let your kids play in the dirt the healthier their immune systems become as my kids are rarely sick, thanks be to God.)
However, as soon as I see one of those backpacks coming home with one of my kids, my stress level goes sky high. Why? Because I become responsible for keeping that friend out of the dogs mouth, away from the swimming pool, and away from food of all kinds. I have to keep track of any accessories that came with it and live in a constant state of terror that we are going to lose or break something. The kids, completely delighted with their special friend, carry it all over the place and I have to trail behind them like the guy behind the elephants at the circus to be sure we don't spoil it for the other kids. This is no small task and I am constantly on guard the entire time the friend is visiting.
As a bonus, I get to look at all the nice pages other parents did for their children while I frantically snap some photos the last day we have the friend, sometimes making the child change clothes so it appears that we did it all along instead of all at once at the end. Then I have to caption these photos in a way that makes the whole visit seem like it was a little taste of heaven.
No, I am not a fan of the share bears. But, I endure what I must for the delight of my children. Sigh.
(If you are still reading, I commend you and thank you--it feels great to get that off my chest.)
Friday, January 11, 2013
Making Memories
We have changed the way we are doing things around here lately.
We have a history of buying things to celebrate our kids achievements (i.e. some silly little not-too-expensive thing they have been wanting). What happens is that they love their little thing for awhile and then it takes its place in the junk pile before a month has passed and off it goes to Goodwill. We have come to understand that this is not a good way to teach our kids to live the spirit of poverty, nor is it good to feed their natural tendency towards consumerism. Yet, we still want to celebrate our family when they do something special or particularly good, so what to do?
It was Jay's spiritual director that made it clear for us. "Make memories," he said. Rather than buying a new pair of gloves or a giant gummy bear or some magnetic men or a nerf gun, he explained, we should channel those resources instead into making memories that will last a lifetime for the whole family. This is especially true given my precarious and unpredictable health situation. In theory, this should bring our family closer together and help us detach from "stuff" and learn rather to appreciate each other for who we are and truly celebrate together the accomplishments of the individuals.
We have been doing this for awhile now, and so far we are quite happy with the results. It is not perfect (we still sometimes give in on the "stuff" but less than we used to), but the truth is that we can really see better relationships developing between our children.
We rarely go out to eat at real restaurants and we hardly ever go as a family to a movie. The boys love to snowboard but rarely go. The girls are always asking to go ice skating but we don't. When there are so many children, any normal outing such as the zoo costs a fortune and it has always seemed more economical to celebrate the individual with something small than doing anything with the entire family. We are learning, however, that economy is not always the most important thing (though it certainly not cannot be ignored). But when you stop buying a lot of little things, you find you have more to work with!
As a result, in recent months, we have made a point to do more and worry less. One day we had lunch and went underground bowling at Bex after church. I played pool with the boys and had so much fun! Over break we took the boys snowboarding at Squaw Valley (they had never seen any ski resort bigger than Mountain High) and the girls (and Tony) finally went ice skating. We saw a couple of movies (Wreck it Ralph and Les Miserables) and we have been out to several meals. Not ordering drinks makes it much more affordable for us (and healthier too as the kids want soda).
Even our Christmas present strategy changed this year. Santa brought one present for the whole family (a Wii u) and each kid got a game to share with the family. This has brought our kids out of their bedrooms and back into the family room as we had hoped. One of the games is Jeopardy and we have so much fun playing together. Another is Just Dance 4, something we can all play and enjoy that has exercise benefits as well.
As the kids are getting older (we only have three years left with Joey!) we are wanting more together time. They are naturally separating due to their ages but we are doing our best to bring them back together. Thanks to Jay's frequent travel, he has a lot (and I mean really a lot) of air miles and hotel ponts. We use those only for the family, for trips together to places most families of nine cannot go. This is our reward for all the time Jay spends away from us working. Like most people, finances are tight for us but we are learning that when God sends a little extra our way, we are supposed to use some of it for making memories.
Making memories doesn't always have to cost money. Sometimes a family dog walk in the desert can be more valuable than anything. Family prayer as many nights as we can keeps us in tune with one another and with God, and we are working on finding a larger dining table that does not double as a homework table so we can eat dinner together at a table most nights (football season exempted since the boys and cheerleaders get home at crazy hours). It is in these things that we are connecting, in these things that we are gluing tight our family bonds.
I pray they stick forever and ever.
We have a history of buying things to celebrate our kids achievements (i.e. some silly little not-too-expensive thing they have been wanting). What happens is that they love their little thing for awhile and then it takes its place in the junk pile before a month has passed and off it goes to Goodwill. We have come to understand that this is not a good way to teach our kids to live the spirit of poverty, nor is it good to feed their natural tendency towards consumerism. Yet, we still want to celebrate our family when they do something special or particularly good, so what to do?
It was Jay's spiritual director that made it clear for us. "Make memories," he said. Rather than buying a new pair of gloves or a giant gummy bear or some magnetic men or a nerf gun, he explained, we should channel those resources instead into making memories that will last a lifetime for the whole family. This is especially true given my precarious and unpredictable health situation. In theory, this should bring our family closer together and help us detach from "stuff" and learn rather to appreciate each other for who we are and truly celebrate together the accomplishments of the individuals.
We have been doing this for awhile now, and so far we are quite happy with the results. It is not perfect (we still sometimes give in on the "stuff" but less than we used to), but the truth is that we can really see better relationships developing between our children.
We rarely go out to eat at real restaurants and we hardly ever go as a family to a movie. The boys love to snowboard but rarely go. The girls are always asking to go ice skating but we don't. When there are so many children, any normal outing such as the zoo costs a fortune and it has always seemed more economical to celebrate the individual with something small than doing anything with the entire family. We are learning, however, that economy is not always the most important thing (though it certainly not cannot be ignored). But when you stop buying a lot of little things, you find you have more to work with!
As a result, in recent months, we have made a point to do more and worry less. One day we had lunch and went underground bowling at Bex after church. I played pool with the boys and had so much fun! Over break we took the boys snowboarding at Squaw Valley (they had never seen any ski resort bigger than Mountain High) and the girls (and Tony) finally went ice skating. We saw a couple of movies (Wreck it Ralph and Les Miserables) and we have been out to several meals. Not ordering drinks makes it much more affordable for us (and healthier too as the kids want soda).
Even our Christmas present strategy changed this year. Santa brought one present for the whole family (a Wii u) and each kid got a game to share with the family. This has brought our kids out of their bedrooms and back into the family room as we had hoped. One of the games is Jeopardy and we have so much fun playing together. Another is Just Dance 4, something we can all play and enjoy that has exercise benefits as well.
As the kids are getting older (we only have three years left with Joey!) we are wanting more together time. They are naturally separating due to their ages but we are doing our best to bring them back together. Thanks to Jay's frequent travel, he has a lot (and I mean really a lot) of air miles and hotel ponts. We use those only for the family, for trips together to places most families of nine cannot go. This is our reward for all the time Jay spends away from us working. Like most people, finances are tight for us but we are learning that when God sends a little extra our way, we are supposed to use some of it for making memories.
Making memories doesn't always have to cost money. Sometimes a family dog walk in the desert can be more valuable than anything. Family prayer as many nights as we can keeps us in tune with one another and with God, and we are working on finding a larger dining table that does not double as a homework table so we can eat dinner together at a table most nights (football season exempted since the boys and cheerleaders get home at crazy hours). It is in these things that we are connecting, in these things that we are gluing tight our family bonds.
I pray they stick forever and ever.
Thursday, January 03, 2013
Eeeeooowwww!
As you know, I can take a decent amount in the pain and suffering department. What happened to me at the dentist today, however, was off the charts. I cried like a little baby.
For several months now, I have had what I thought at first was a very long lasting mouth sore. Except it wasn't sore. It was kind of like a hole with hard edges. Naturally, after awhile I started thinking about mouth cancer. I made my regular cleaning appointment a little sooner than usual to have it checked out.
To my surprise, the hygienist, after scraping around it with that fun pointy tool of hers, declared it to be a bone. I had grown a bone spur on the upper inner quadrant above my last molar that actually poked a hole through my gum. What?! Who does this sort of thing happen to?! I've never even heard of such a thing. But leave it to me to be groundbreaking in a wide variety of medical fields.
Just at that time we were changing our dental plan to a better one that actually covers these sorts of things, so I decided to wait at least until our new insurance kicked in to see if it was going to go away. It was my plan that it would go away on its own and I wouldn't have to deal with it ever. Good plan, right?
While on our mini vacation this past week, I came down with a throbbing toothache right between two crowns in my upper left quadrant. I had by then become so accustomed to my own decision not to deal with the bone spur (and plus, I could no longer feel the bone so I was convinced it was on the mend) that it didn't even occur to me that it might be related. Sadly, I resigned myself to one or possibly two root canals, two new crowns or even (gasp!) a bridge, cursing the family teeth the whole way. As it turned out, any of those things might have been more pleasant than what actually happened.
When I arrived at the dentist this afternoon I told him where I hurt and pointed out the original "mouth sore" to show him how the bone was no longer showing through. After painfully prodding the entire area he informed me that it wasn't closed up, just swollen over. Uh oh.
I had developed an infected abscess behind my back molar that was radiating pain through the entire quadrant. Gum surgery, he announced, was in order right away. He happened to have an opening in his normally packed schedule, so he said enthusiastically, "Wanna do it now?" Oh, boy. No notice. No time to search for information/read horror stories on the internet. Just like that?
I weighed my options for about 30 seconds. I like and trust my dentist. I am sure he was not suggesting something I did not need. If I left, it would only get worse and I'd have to do it anyway. The kids are still out of school, there's not too much going on the rest of this week, our new and improved dental insurance is in place, Jay is home, so I couldn't really find a reason not to. "OK," I agreed.
"It won't be too bad," he cheerfully mentioned as he began gathering his tools. I looked immediately at his assistant who looked guilty and said, when questioned by my terrified eyes, "It is going to be tender for awhile after, but you won't feel the actual procedure."
She was right on both counts. He jammed so much Novocain into my upper left jaw that I thought I would never feel anything again. Six, seven or who knows how many shots later, even my throat was turning numb from the run off and I felt as if I couldn't swallow. My heart started racing (as it usually does when I receive Novocain but I had forgotten that detail), my body started shaking uncontrollably and I had a genuine panic attack. I made them sit me up so I could breath through it. Both the dentist and his assistant waited it out patiently as apparently this is a fairly common reaction to large amounts of Novocain. Sure enough it passed in less than a minute and they talked me through it gently, but it really rattled my cage. Far worse was this than the head stabilizing cage of the brain cancer patient in terms of claustrophobia.
What came next I could not feel, but could hear and imagine. It began with his assistant asking which tools he would be needing, and his answer was, "All of them." Really?
From what I could gather, he cut my gum in a horseshoe shape around both sides and behind the three last molars on the top left. You know, right where my gag reflex is. He is very lucky I did not throw up on him because I wretched pretty severely half a dozen times or so during the procedure Good thing I didn't have lunch before I went.
He peeled back what he referred to as "the flaps" and got busy shaving and grinding the bumps off my bones on both sides (prophylactic as I had many such small spurs) and thinning the surrounding tissue (why, I don't exactly know).
When the assistant was suctioning the area near the original hole, her vacuum got clogged by a piece of bone that had come off my jaw and was just hanging out in the gum. I was so fascinated by this that I made her give me the bone piece in a zip lock bag (yes, she thought it was weird, but who cares?). This was not a bone he shaved, it was already off when he opened me up. No wonder it hurt so much.
Next, he cleaned out the infection (I won't disgust you with the details) and then sewed me up. Stitch after stich after stich, the dangling thread ticking my nose and face as it dragged along. Finally, he packed me with a silly putty type substance to hold the stitches together, cleaned the blood off my face and told me he'd see me in a week. I didn't feel anything except pressure during the whole procedure. Even his initial shots were painless as he is particularly good about jiggling and pushing the Novocaine slowly so you don't feel it. My kids go to him too and not one has ever realized that he has ever given them a shot of any kind. It is a total bonus to truly like your dentist, the tour guide of such painful and scary adventures.
Normally when I get a cavity filled I wait for hours and hours for the Novocaine to wear off so I can eat normally without biting a hole in my cheek. It drags on and on. Of course that was not the case this time. By the time I was a few blocks from home I was wondering what the heck happened to the numbness as I could feel everything as if I'd never had any medication at all.
The word "pain" does not describe it adequately. The only time I can ever remember hurting more (and remember, folks, that I have birthed seven babies under a variety of conditions) was when I suffered a severe wrist fracture from the air bag that opened to save my life when we were in a car accident in 2006. It took a pharmacy (and thank goodness I happen to have one--cancer bonus!), a creative and experienced pharmacist (me), and nearly four hours to get my pain under control. Now I am in maintenance mode and feeling like a human being again, but boy what a ride.
Most of you probably stopped reading this long ago out of disgust or sheer boredom, but for those of you still with me, thanks for sticking it out. It was such a refreshing break from cancer blather that I really couldn't help chronicling every detail. I feel oddly happy to have some other kind of news to share.
My dentist's post-surgical instructions remind me that the worst pain will likely peak 36 hours after the procedure. So don't call me on Saturday as I probably won't be in a very good mood.
Happy New Year! And thank the good Lord for decent dental benefits (if there is such a thing). We changed our plan in the nick of time, which I know was no accident.
Oh, and by the way, after a careful review of the situation, I can now see that I don't REALLY think a root canal and new crowns would be preferable to this. After all, this is over now...I hope! That whole root canal and crown thing goes on for weeks. I guess in retrospect I can admit that this was the better source of the pain. See, writing this blog is better than counseling for me!
For several months now, I have had what I thought at first was a very long lasting mouth sore. Except it wasn't sore. It was kind of like a hole with hard edges. Naturally, after awhile I started thinking about mouth cancer. I made my regular cleaning appointment a little sooner than usual to have it checked out.
To my surprise, the hygienist, after scraping around it with that fun pointy tool of hers, declared it to be a bone. I had grown a bone spur on the upper inner quadrant above my last molar that actually poked a hole through my gum. What?! Who does this sort of thing happen to?! I've never even heard of such a thing. But leave it to me to be groundbreaking in a wide variety of medical fields.
Just at that time we were changing our dental plan to a better one that actually covers these sorts of things, so I decided to wait at least until our new insurance kicked in to see if it was going to go away. It was my plan that it would go away on its own and I wouldn't have to deal with it ever. Good plan, right?
While on our mini vacation this past week, I came down with a throbbing toothache right between two crowns in my upper left quadrant. I had by then become so accustomed to my own decision not to deal with the bone spur (and plus, I could no longer feel the bone so I was convinced it was on the mend) that it didn't even occur to me that it might be related. Sadly, I resigned myself to one or possibly two root canals, two new crowns or even (gasp!) a bridge, cursing the family teeth the whole way. As it turned out, any of those things might have been more pleasant than what actually happened.
When I arrived at the dentist this afternoon I told him where I hurt and pointed out the original "mouth sore" to show him how the bone was no longer showing through. After painfully prodding the entire area he informed me that it wasn't closed up, just swollen over. Uh oh.
I had developed an infected abscess behind my back molar that was radiating pain through the entire quadrant. Gum surgery, he announced, was in order right away. He happened to have an opening in his normally packed schedule, so he said enthusiastically, "Wanna do it now?" Oh, boy. No notice. No time to search for information/read horror stories on the internet. Just like that?
I weighed my options for about 30 seconds. I like and trust my dentist. I am sure he was not suggesting something I did not need. If I left, it would only get worse and I'd have to do it anyway. The kids are still out of school, there's not too much going on the rest of this week, our new and improved dental insurance is in place, Jay is home, so I couldn't really find a reason not to. "OK," I agreed.
"It won't be too bad," he cheerfully mentioned as he began gathering his tools. I looked immediately at his assistant who looked guilty and said, when questioned by my terrified eyes, "It is going to be tender for awhile after, but you won't feel the actual procedure."
She was right on both counts. He jammed so much Novocain into my upper left jaw that I thought I would never feel anything again. Six, seven or who knows how many shots later, even my throat was turning numb from the run off and I felt as if I couldn't swallow. My heart started racing (as it usually does when I receive Novocain but I had forgotten that detail), my body started shaking uncontrollably and I had a genuine panic attack. I made them sit me up so I could breath through it. Both the dentist and his assistant waited it out patiently as apparently this is a fairly common reaction to large amounts of Novocain. Sure enough it passed in less than a minute and they talked me through it gently, but it really rattled my cage. Far worse was this than the head stabilizing cage of the brain cancer patient in terms of claustrophobia.
What came next I could not feel, but could hear and imagine. It began with his assistant asking which tools he would be needing, and his answer was, "All of them." Really?
From what I could gather, he cut my gum in a horseshoe shape around both sides and behind the three last molars on the top left. You know, right where my gag reflex is. He is very lucky I did not throw up on him because I wretched pretty severely half a dozen times or so during the procedure Good thing I didn't have lunch before I went.
He peeled back what he referred to as "the flaps" and got busy shaving and grinding the bumps off my bones on both sides (prophylactic as I had many such small spurs) and thinning the surrounding tissue (why, I don't exactly know).
When the assistant was suctioning the area near the original hole, her vacuum got clogged by a piece of bone that had come off my jaw and was just hanging out in the gum. I was so fascinated by this that I made her give me the bone piece in a zip lock bag (yes, she thought it was weird, but who cares?). This was not a bone he shaved, it was already off when he opened me up. No wonder it hurt so much.
Next, he cleaned out the infection (I won't disgust you with the details) and then sewed me up. Stitch after stich after stich, the dangling thread ticking my nose and face as it dragged along. Finally, he packed me with a silly putty type substance to hold the stitches together, cleaned the blood off my face and told me he'd see me in a week. I didn't feel anything except pressure during the whole procedure. Even his initial shots were painless as he is particularly good about jiggling and pushing the Novocaine slowly so you don't feel it. My kids go to him too and not one has ever realized that he has ever given them a shot of any kind. It is a total bonus to truly like your dentist, the tour guide of such painful and scary adventures.
Normally when I get a cavity filled I wait for hours and hours for the Novocaine to wear off so I can eat normally without biting a hole in my cheek. It drags on and on. Of course that was not the case this time. By the time I was a few blocks from home I was wondering what the heck happened to the numbness as I could feel everything as if I'd never had any medication at all.
The word "pain" does not describe it adequately. The only time I can ever remember hurting more (and remember, folks, that I have birthed seven babies under a variety of conditions) was when I suffered a severe wrist fracture from the air bag that opened to save my life when we were in a car accident in 2006. It took a pharmacy (and thank goodness I happen to have one--cancer bonus!), a creative and experienced pharmacist (me), and nearly four hours to get my pain under control. Now I am in maintenance mode and feeling like a human being again, but boy what a ride.
Most of you probably stopped reading this long ago out of disgust or sheer boredom, but for those of you still with me, thanks for sticking it out. It was such a refreshing break from cancer blather that I really couldn't help chronicling every detail. I feel oddly happy to have some other kind of news to share.
My dentist's post-surgical instructions remind me that the worst pain will likely peak 36 hours after the procedure. So don't call me on Saturday as I probably won't be in a very good mood.
Happy New Year! And thank the good Lord for decent dental benefits (if there is such a thing). We changed our plan in the nick of time, which I know was no accident.
Oh, and by the way, after a careful review of the situation, I can now see that I don't REALLY think a root canal and new crowns would be preferable to this. After all, this is over now...I hope! That whole root canal and crown thing goes on for weeks. I guess in retrospect I can admit that this was the better source of the pain. See, writing this blog is better than counseling for me!
Sunday, December 30, 2012
Seriously?
I have a cold. I have had it for a few weeks now and I am ready for it to go away. It stole my singing and speaking voice over Christmas so I had to skip singing with my choir at our annual Christmas concert and midnight mass. If that wasn't insult enough, I completely lost credibility as an authority figure where my children were concerned, as all I could do was squeak pathetically at them when they were being less than angelic.
But tonight brought the diamond in the tiara. Bella asked me to sing her a lullaby as she often does, when I tucked her in. My voice is just starting to come back and I was thrilled when I realized I could carry a recognizable tune. Bella, however, was not impressed. She stopped me half way through and told my that my voice was not so good and could I please try another song.
I have sunk to a new low. Sigh.
Saturday, December 29, 2012
Don't Think He Misses Us
We are on a much needed mini-vacation so our dog Trooper is staying with friends of ours. If you look up the definition of friendship you will find this: people willing to house your gigantic, stinky, drooling, sensitive-stomached Mastiff while you are away.
I received this photo today and can safely say the dog is not suffering in our absence. He's as happy as he gets when someone is willing to lay on the floor with him and cuddle.
If you know me you know that I am not the dog's biggest fan within our household. Don't get me wrong, I love the dog, but you wouldn't know it by observation. I don't pet him often, never get down on the floor with him...at best I give him a rub with my foot. Why? Because he really is disgusting and I spend most of my life nauseous. But when he is freshly bathed (as he was when we handed him over) and looking so sweet and furry, I can't help but miss him.
Thank you, Briana and Jason, for loving our dog!
Wednesday, December 05, 2012
Stable
It's a good thing, really!
Yes, of course I wanted to see a perfectly clean brain with no spots at all. Yet, my biggest fear was that there would be half a dozen or more new spots growing or that the one that was recently treated was still growing unfettered. The news I got is in the middle of these two extremes and I'll take it gratefully.
I am showing three metastatic spots, all previously seen, one recently treated that has not grown or changed and the other two too small to need any attention at this point. My brain radiologist was happy with what he saw and says he will see me again after my next scan in early February. I have at very least two more peaceful months, so what is not to be happy about? As they say on the breast cancer boards, I get to have a dance with the stable boy!
I am adjusting to my new medication regime which is, overall, much better. Every other week I take Xeloda and feel sick and tired for that week. During the "off" week I am feeling better than I have literally in years, because my doctor reduced my dose of Tykerb (daily oral) to accomodate the side effects that come with the Xeloda. I had no idea how much of my general malaise was due to the dose of Tykerb I was taking until it was reduced. I am also finally off my two daily injections of Lovinox, so I am taking less medicine overall and feeling nearly normal during my off week. I had forgotten, truly, what it feels like to feel good for days at a time.
As usual, God has blessed me richly, and I am reminded that no news really is good news. Thanks for all your prayers!
Yes, of course I wanted to see a perfectly clean brain with no spots at all. Yet, my biggest fear was that there would be half a dozen or more new spots growing or that the one that was recently treated was still growing unfettered. The news I got is in the middle of these two extremes and I'll take it gratefully.
I am showing three metastatic spots, all previously seen, one recently treated that has not grown or changed and the other two too small to need any attention at this point. My brain radiologist was happy with what he saw and says he will see me again after my next scan in early February. I have at very least two more peaceful months, so what is not to be happy about? As they say on the breast cancer boards, I get to have a dance with the stable boy!
I am adjusting to my new medication regime which is, overall, much better. Every other week I take Xeloda and feel sick and tired for that week. During the "off" week I am feeling better than I have literally in years, because my doctor reduced my dose of Tykerb (daily oral) to accomodate the side effects that come with the Xeloda. I had no idea how much of my general malaise was due to the dose of Tykerb I was taking until it was reduced. I am also finally off my two daily injections of Lovinox, so I am taking less medicine overall and feeling nearly normal during my off week. I had forgotten, truly, what it feels like to feel good for days at a time.
As usual, God has blessed me richly, and I am reminded that no news really is good news. Thanks for all your prayers!
Saturday, December 01, 2012
Happy Birthday, Baby!
Not a baby any more, I'm afraid, but always the baby of the family. Happy fourth birthday Natalie!
We celebrated at Magic Mountain today (Lindsey happened to be participating in a cheer competition where her team took home first and second place trophies in the two divisions in which they competed...GO REBELS!) and we will have a more traditional party tomorrow with cake and a jumper and a few of her little compadres.
I simply can't believe Natalie is four, although at the same time she has seemed far older than she is for some time now. She is very articulate for her age and has a well developed sense of humor that keeps us all laughing. She is smart as a whip, independent and competent, and as stubborn as they come. She is so sweet and cute and loving that I mostly ignore the stubborn part, because it is impossible to stay mad at her for more than a minute. She has us all wrapped around her little finger and I can't imagine life without her. I feel so blessed to be healthy enough right now to give her all the attention the youngest of seven can get and am savoring this last year and a half with her before she goes off to Kindergarten.
Happy birthday Natalie. I love you with all my heart!
We celebrated at Magic Mountain today (Lindsey happened to be participating in a cheer competition where her team took home first and second place trophies in the two divisions in which they competed...GO REBELS!) and we will have a more traditional party tomorrow with cake and a jumper and a few of her little compadres.
I simply can't believe Natalie is four, although at the same time she has seemed far older than she is for some time now. She is very articulate for her age and has a well developed sense of humor that keeps us all laughing. She is smart as a whip, independent and competent, and as stubborn as they come. She is so sweet and cute and loving that I mostly ignore the stubborn part, because it is impossible to stay mad at her for more than a minute. She has us all wrapped around her little finger and I can't imagine life without her. I feel so blessed to be healthy enough right now to give her all the attention the youngest of seven can get and am savoring this last year and a half with her before she goes off to Kindergarten.
Happy birthday Natalie. I love you with all my heart!
Friday, November 16, 2012
Happy Cancerversary to Me!
And many more...
Yes, it's true. Today marks three years since my diagnosis. Three years of ups and downs, of worry and relief, a true physical and emotional roller coaster. I know I am very blessed to be here to note this date and thank you all again who have prayed so tirelessly for me and supported me in every way for three years now. One day at a time will hopefully collectively bring me three more years times 10 or more. One can hope!
Along with noting this milestone, I would like to report on just one of many reasons I am determined to continue logging these anniversaries year after year...
Today Natalie and Bella were being particularly challenging and I wasn't feeling 100% up to dealing with it all. As we pulled into the garage after a very long drive home from the gym I told them that they had behaved very naughtily. From the backseat, a cheerful voice said, "Natalie?! That's my FAVORITE word!"
Leave all of this? No way.
Yes, it's true. Today marks three years since my diagnosis. Three years of ups and downs, of worry and relief, a true physical and emotional roller coaster. I know I am very blessed to be here to note this date and thank you all again who have prayed so tirelessly for me and supported me in every way for three years now. One day at a time will hopefully collectively bring me three more years times 10 or more. One can hope!
Along with noting this milestone, I would like to report on just one of many reasons I am determined to continue logging these anniversaries year after year...
Today Natalie and Bella were being particularly challenging and I wasn't feeling 100% up to dealing with it all. As we pulled into the garage after a very long drive home from the gym I told them that they had behaved very naughtily. From the backseat, a cheerful voice said, "Natalie?! That's my FAVORITE word!"
Leave all of this? No way.
Friday, November 02, 2012
Latest Scan News
First of all, I did not forget about Halloween pictures! I will post some as soon as my tech-savvy husband returns from his business trip and can show me how to put the pictures we took with my still- newish fancy camera on my ultra-light computer that does not have a card reader slot.
In the meantime, I thought I would share the news from my most recent PET/CT scan. This is a scan that does not include the brain (I will have a brain MRI in 4 weeks) but rather goes neck to knees. It is checking for progression in soft tissue organs such as lungs and liver, and also quantifies activity in those ever present and pesky bone lesions.
The good news: liver and lungs remain clear.
The not-as-good news: several new bone mets have popped up with intense activity and some old ones continue to fester. In other words, my current treatment is not as effective as we would like it to be on my bone mets. Therefore, we need to make some changes to ensure that my bones don't weaken to the point of spontaneous fractures, and that the cancer stays put and doesn't seed to the currently healthy soft tissue organs.
So what is next on the medication merry-go-round? Xeloda. An oral chemo (a real chemo this time) taken twice daily one week on and one week off. This drug is often used in combination with Tykerb, which I have been taking for some time now, and should make my systemic treatment more effective. It will not, however, offer any benefit for my brain.
The side effects are mostly already familiar to me...fatigue, nausea, loss of appetite, etc. but there is a new one to add to the bunch. Many people who take Xeloda develop a hand/foot condition that seriously irritates and sometimes blisters the soles of the feet and the palms of the hands. This happens to people in differing intensities, so I am praying for a light case of THAT. But if it stretches out my time with my kids, it is all worth it.
But what a shame I won't be able to do dishes anymore! Happily, our wonderful helper Teresa has agreed to come another day and we now have her M-F, so I should be able to avoid drowning in dirty dishes and laundry while preserving my poor palms. Hope I can still type!
So, that's the latest from cancer central. Nothing too terrible (relatively speaking of course) but one more thing to add to my cross. For my friend who keeps telling me that God is purifying me through all of this, I can only remain grateful for that and hope that I am nearing squeaky clean!
In the meantime, I thought I would share the news from my most recent PET/CT scan. This is a scan that does not include the brain (I will have a brain MRI in 4 weeks) but rather goes neck to knees. It is checking for progression in soft tissue organs such as lungs and liver, and also quantifies activity in those ever present and pesky bone lesions.
The good news: liver and lungs remain clear.
The not-as-good news: several new bone mets have popped up with intense activity and some old ones continue to fester. In other words, my current treatment is not as effective as we would like it to be on my bone mets. Therefore, we need to make some changes to ensure that my bones don't weaken to the point of spontaneous fractures, and that the cancer stays put and doesn't seed to the currently healthy soft tissue organs.
So what is next on the medication merry-go-round? Xeloda. An oral chemo (a real chemo this time) taken twice daily one week on and one week off. This drug is often used in combination with Tykerb, which I have been taking for some time now, and should make my systemic treatment more effective. It will not, however, offer any benefit for my brain.
The side effects are mostly already familiar to me...fatigue, nausea, loss of appetite, etc. but there is a new one to add to the bunch. Many people who take Xeloda develop a hand/foot condition that seriously irritates and sometimes blisters the soles of the feet and the palms of the hands. This happens to people in differing intensities, so I am praying for a light case of THAT. But if it stretches out my time with my kids, it is all worth it.
But what a shame I won't be able to do dishes anymore! Happily, our wonderful helper Teresa has agreed to come another day and we now have her M-F, so I should be able to avoid drowning in dirty dishes and laundry while preserving my poor palms. Hope I can still type!
So, that's the latest from cancer central. Nothing too terrible (relatively speaking of course) but one more thing to add to my cross. For my friend who keeps telling me that God is purifying me through all of this, I can only remain grateful for that and hope that I am nearing squeaky clean!
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