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!
Saturday, April 27, 2013
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!
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