I know it's been awhile since my last post and I do try very hard to post an update as much as I can, but by nightfall, I'm just really tired with the kids and helping them with homework. Anyhow, life in general has been busier and busier. My schedule is super full and I just barely have any free down time for even myself. Between working full time, the kids, spending time with them and keeping up with school registrations, their activities, looking at refinancing, kids getting sick, getting treatment, household errands, kid play dates, birthday parties, pet play dates, etc, we're just busy. I'm trying the best I can to do it all, balance it all and enjoying life to the fullest.
Overall Update
Here's a quick run down of everything. I just had my CT scan done this past Tuesday, 9/11. I went in to see Dr. Neal Wednesday, 9/12 and got the results. Overall, the results show tumors in my right lungs fall between relatively stable or slight progression, meaning, it shows one spot grew about .5 cm and the tumors now are seen as more denser. The bone mets are all basically the same, except there's one tiny new spot about less than 1 cm in my lower back spine, and possibly one tiny new "suspicious" spot in my liver. Dr. Neal now recommends me to stop my Gemzar chemo treatment and start Crizotinib pill. I have not started it yet as I'm waiting for my insurance to issue a mail order 30 day supply. Along with that I'm supposed to get an additional set of blood draws done every few weeks to see the percentage of "ALK" like proteins in my blood. That's just an extra tube of blood labs drawn in addition to my the usual 6 or so tubes of weekly blood draws I still have to do to monitor my CBC, Metabolic, Kidneys, Liver function and other such things I still must do. I' m also planning to apply for co-pay assistance program since this pill retails like $9,400 per month and my copays could relatively be expensive. (I know, it's unbelievable how much this pill costs!)
After hearing the results, after the kids went to bed, I stayed up late, researching, reading and educating myself on this new treatment plan. I'm optimistically hopeful, nervous and anxiously unsure of what and how this new Crizotinib will be like on me since everyone is unique and reacts to it a differently. Some of the known side effects that Dr. Neal told me to be aware of are: slight vision changes, especially from day to night vision, swollen legs from the knee down on both legs, some GI-gastro intestinal effects, some nausea, and possibly a little headache from time to time to name a few of the common effects reported from patients.
I hope it will be an effective treatment plan and that I can stay on it for a long time. Since the latest mutation test show that I have over "90% ALK" mutation match, I can only keep up hope, wish, pray that this new treatment will be effective, easy on stomach and that its side effects will be relatively "easy" on me. It will be a such a blessing if it really will be the 'miracle' pill that will shrink all my tumors, declare me NED or in remission! Aaah, that would the ultimate dream to have that happen.
On another note, next Wednesday, Sept 19, I have to do my routine 3 month brain MRI. I will see my neuro surgeon that same day and will find out the results. Let's hope things all stable on my brain mets as well and I don't have to do any Cyberknife.
Kids Busy schedule
All 3 kids are now in school, except, each of them all go to different schools, which make pickups, drop offs and planning all the more complicated. Emma has just started her preschool, MWFs program at a local elementary school. Ellen, who is 4 years old, also started a new preschool this week for 5 days. Except, one complication, it didn't work out as I didn't like its curriculum, the structure, the setting and it's sort of laughable that it's called a preschool in the first place. From the 1st day to day three, I instantly knew from her homework assignments and talking to her that it wasn't a good fit for her or for us. Since day one, from dropping her off on Monday, 9/10 to this past Wednesday 9/12 (day 3 for her), I had a gut feeling and from observation and talking to her teacher, that this was not the preschool like setting at all and it would not work. Marketing wise, even though it stated that its main focus was phonics and numbers, preparing her for kindergarten, it's definitely more like a tutoring program. So, by Friday, I had to quickly pull her out of that program and jump through loops in a mad dash to register her onto another community preschool that fits her age group and curriculum. Now, starting this coming Monday, Sept 17, she starts a new preschool geared towards preparing her for Kindergarten, call KinderReady and is a well balance, academica program. I hope she will like it more as it will definitely give her all the opportunities to be curious, be excited and make learning fun.
As for Ethan, he's doing really well in his 1st grade class at a new elementary school too. I'm so glad he's an easy going kid and is easily adaptable and flexible to new schools and new environments where he's able to quickly be social and make new friends. He's smart and works very hard to make us proud.
Dance, Soccer and Day Trips
Now that summer is almost over, all 3 kids are now back to some extra curricular activities, like art, dance and soccer. During the weekday, they have 1-2 art lessons after their school day so that they can learn to express creatively their art skills after reading a book. On Saturdays, the girls are back to their 45 minute dance classes in the mornings and Ethan will also start playing Soccer with kids in his age group. The girls just had their dance lessons today and loved it! Ethan is looking forward to his soccer practice and games and I hope he will enjoy it as well as gain learn new skills like teamwork, and get in some physical exercise.
I have lots of day trips, Disney on Ice tickets, parks, festivals, beaches (Santa Cruz boardwalk all day free ride tickets), museums, friends to visit and much more plans to do with them -- all sort of squeezed in the weekends since they have school during the week day. One of them is doing a family "tent camping" event at home, where we'd camp out at home in a real tent, roast marshmallows, tell stories, light up our fireplace, use flashlight, and pretend we're really camping out in the woods, without the fear of bears and wild animals and all the hard work. It'll be fun and something as practice/pretend play for now before we do an actual family camping trip in local or national forest or park.
During the labor day weekend, the kids and I went to see the circus and we went to a kid friendly festival all day venue as well as attended a BBQ play date. We had so much fun.
All in all, I'm doing well. I'm so glad to be feeling great, keeping busy, and working full time. I have so much deep gratitude for having the energy to live life to the fullest with my family. I'm grateful to be able to participate in my kids lives and offer my kids a normal, routine schedule and activities so they have all the happiness they deserve; just like other kids.
Let's keep our fingers crossed, our prayers, hearts and thoughts positively towards more good health . I'm keeping up my daily wishes for a miracle to happen. Hopefully it will happen with this new Crizotinib pill treatment that I will be newly embarking on. Lots of Love.
Overall Update
Here's a quick run down of everything. I just had my CT scan done this past Tuesday, 9/11. I went in to see Dr. Neal Wednesday, 9/12 and got the results. Overall, the results show tumors in my right lungs fall between relatively stable or slight progression, meaning, it shows one spot grew about .5 cm and the tumors now are seen as more denser. The bone mets are all basically the same, except there's one tiny new spot about less than 1 cm in my lower back spine, and possibly one tiny new "suspicious" spot in my liver. Dr. Neal now recommends me to stop my Gemzar chemo treatment and start Crizotinib pill. I have not started it yet as I'm waiting for my insurance to issue a mail order 30 day supply. Along with that I'm supposed to get an additional set of blood draws done every few weeks to see the percentage of "ALK" like proteins in my blood. That's just an extra tube of blood labs drawn in addition to my the usual 6 or so tubes of weekly blood draws I still have to do to monitor my CBC, Metabolic, Kidneys, Liver function and other such things I still must do. I' m also planning to apply for co-pay assistance program since this pill retails like $9,400 per month and my copays could relatively be expensive. (I know, it's unbelievable how much this pill costs!)
After hearing the results, after the kids went to bed, I stayed up late, researching, reading and educating myself on this new treatment plan. I'm optimistically hopeful, nervous and anxiously unsure of what and how this new Crizotinib will be like on me since everyone is unique and reacts to it a differently. Some of the known side effects that Dr. Neal told me to be aware of are: slight vision changes, especially from day to night vision, swollen legs from the knee down on both legs, some GI-gastro intestinal effects, some nausea, and possibly a little headache from time to time to name a few of the common effects reported from patients.
I hope it will be an effective treatment plan and that I can stay on it for a long time. Since the latest mutation test show that I have over "90% ALK" mutation match, I can only keep up hope, wish, pray that this new treatment will be effective, easy on stomach and that its side effects will be relatively "easy" on me. It will be a such a blessing if it really will be the 'miracle' pill that will shrink all my tumors, declare me NED or in remission! Aaah, that would the ultimate dream to have that happen.
On another note, next Wednesday, Sept 19, I have to do my routine 3 month brain MRI. I will see my neuro surgeon that same day and will find out the results. Let's hope things all stable on my brain mets as well and I don't have to do any Cyberknife.
Kids Busy schedule
All 3 kids are now in school, except, each of them all go to different schools, which make pickups, drop offs and planning all the more complicated. Emma has just started her preschool, MWFs program at a local elementary school. Ellen, who is 4 years old, also started a new preschool this week for 5 days. Except, one complication, it didn't work out as I didn't like its curriculum, the structure, the setting and it's sort of laughable that it's called a preschool in the first place. From the 1st day to day three, I instantly knew from her homework assignments and talking to her that it wasn't a good fit for her or for us. Since day one, from dropping her off on Monday, 9/10 to this past Wednesday 9/12 (day 3 for her), I had a gut feeling and from observation and talking to her teacher, that this was not the preschool like setting at all and it would not work. Marketing wise, even though it stated that its main focus was phonics and numbers, preparing her for kindergarten, it's definitely more like a tutoring program. So, by Friday, I had to quickly pull her out of that program and jump through loops in a mad dash to register her onto another community preschool that fits her age group and curriculum. Now, starting this coming Monday, Sept 17, she starts a new preschool geared towards preparing her for Kindergarten, call KinderReady and is a well balance, academica program. I hope she will like it more as it will definitely give her all the opportunities to be curious, be excited and make learning fun.
As for Ethan, he's doing really well in his 1st grade class at a new elementary school too. I'm so glad he's an easy going kid and is easily adaptable and flexible to new schools and new environments where he's able to quickly be social and make new friends. He's smart and works very hard to make us proud.
Dance, Soccer and Day Trips
Now that summer is almost over, all 3 kids are now back to some extra curricular activities, like art, dance and soccer. During the weekday, they have 1-2 art lessons after their school day so that they can learn to express creatively their art skills after reading a book. On Saturdays, the girls are back to their 45 minute dance classes in the mornings and Ethan will also start playing Soccer with kids in his age group. The girls just had their dance lessons today and loved it! Ethan is looking forward to his soccer practice and games and I hope he will enjoy it as well as gain learn new skills like teamwork, and get in some physical exercise.
I have lots of day trips, Disney on Ice tickets, parks, festivals, beaches (Santa Cruz boardwalk all day free ride tickets), museums, friends to visit and much more plans to do with them -- all sort of squeezed in the weekends since they have school during the week day. One of them is doing a family "tent camping" event at home, where we'd camp out at home in a real tent, roast marshmallows, tell stories, light up our fireplace, use flashlight, and pretend we're really camping out in the woods, without the fear of bears and wild animals and all the hard work. It'll be fun and something as practice/pretend play for now before we do an actual family camping trip in local or national forest or park.
During the labor day weekend, the kids and I went to see the circus and we went to a kid friendly festival all day venue as well as attended a BBQ play date. We had so much fun.
All in all, I'm doing well. I'm so glad to be feeling great, keeping busy, and working full time. I have so much deep gratitude for having the energy to live life to the fullest with my family. I'm grateful to be able to participate in my kids lives and offer my kids a normal, routine schedule and activities so they have all the happiness they deserve; just like other kids.
Let's keep our fingers crossed, our prayers, hearts and thoughts positively towards more good health . I'm keeping up my daily wishes for a miracle to happen. Hopefully it will happen with this new Crizotinib pill treatment that I will be newly embarking on. Lots of Love.
Just saw this article today about medical marijuana halting aggressive cancers.
ReplyDeletehttp://www.huffingtonpost.com/2012/09/19/marijuana-and-cancer_n_1898208.html
Hope it can potentially help.