Lazy, family days

Ok, big change of vacation plans this Christmas holiday year. Instead of doing the overly craziness of traveling and crowds, we decided to stay in town this year to just hang out at home, doing lots of family time. I had a whole list of places to go and do, but with the rainy, wet weather all week long, we hardly ventured outside, except to run errands, playing in our back yard and visiting family. We had friends and neighbors visiting us, watched some good holiday movies, studied every morning and sometimes in the evenings where the kids worked on their phonics reading, baked cookies, walked the dogs, slept in and just hang out together.

At first I had high traveling plans, setting out to do Disneyland and Tahoe all in a week's time, but, my hubby got a bit lazy to do the driving, and so we decided to just relax and have fun staying home. Traveling is fun, but it's a lot of work too. Either way, it doesn't really matter where we are at or the places we go, it's nice that we all spent time together, focusing on quality family time.

On Christmas eve, we had some good friends visiting us and then we went to visit our neighbors to give out gifts to thank them and to wish them a Merry Christmas. One of neighbors gave us wine and chicken for dinner.  Isn't that so nice of them.  Ethan, Ellen and Emma loved giving out gifts and giving gratitude. I try to instill in them a sense of being thankful for all that we have and to love and support one another.

All is well with me. I'm just so glad to wake up each day with a wonderful, loving husband and kids. I'm blessed to have this wonderful life. Lots of Love.

On Vacation

Atlas, my vacation from work is officially on as of today! I couldn't wait to be off to hang out with the kids and focus on family time. I was already in  vacation mode since Wednesday because the kids were home, my hubby was off and I had such a wonderful day, logging off at noon from work to just hang out with my family and my good friend Moanie.

After my appointment with my acupuncturist where I focused on healing and wellness, I had a late lunch with her and then, we treated ourselves to an hour long of foot massages and Chinese style whole body massage. It was so nice to just catch up, hang out and relax outside of our usual meetings at Stanford. What a treat. I'm so humbled and ever so grateful for her friendship, love and support. So, thank you Moanie, for always being there for me and taking time out from your busy schedule to hang out with me. You are an angel.

Last week, since the girls love dancing, ballet and musicals, we ventured out to see a  ballet show called a Winter's Fairy tale. They loved it. Their was snow, Santa and lots of little ballerinas dancing in beautiful tutus. Afterwards, we had a lovely dinner at nearby restaurant close to home. It was a magical day. Of course, as usual, they had already finished studying and doing their Kumon study lessons in early part of the morning so it was all play and family fun afterwards.

As is well with me. Xalkori is keeping me well. Work's been great as we now have a new team member to my group and it's makes such a difference. I'm carpooling to work and loving it

I'm so thankful for a wonderful year.

As for our family plans, we'll be spending a day with my family for a potluck, perhaps going to Tahoe, seeing Christmas light events and just enjoy being together. We'll be baking cookies, pancakes, pie pops, cooking dinners, watching good movies, riding our bikes at the parks and having fun/

Merry Christmas everyone. Cheers. May we all have to continued happiness, health, peace and harmony. Lots of Love.

Happy Holidays! MRI results

Happy Holidays everyone. I saw a whole team of doctors last week, including Dr. Neal and Dr. Chang, my neurosurgeon.  Good news, my brain MRI and left foot xray all came out great. Everything is stable. No new lesions and no new findings. Hurray.

I'm feeling great. Thank goodness for Xalkori.  I'm feeling good as ever. My breathing is as clear as can be. Even Dr. Neal says he's never heard my lungs so clear. I'm so happy for this wonderful drug.

It's been awhile since my last post, so I'll catch up everyone on the happenings in the Pham family since my Thanksgiving.  Turkey day, Thanksgiving was great. I cooked the full course dinner and the turkey turned out great! Originally, I had thought that turkey dinner I had ordered was fully cooked, but nope, I didn't read the details and it came frozen and uncooked. But, no biggie, it all worked out as I thawed it 2 days ahead and had it all marinated for 2 days in the frig. We had a few family guests (nease, sister and their significant others) come over last minute to help us celebrate and enjoy great food. My kids, have yet to acquire the taste of Turkey. They always prefer their own kid type of food.

We are enjoying the holidays and are so looking forward for having the holidays off with them. We have lots of day trips in mind. Luckily, my hubby will have the time off too so that we can all enjoy time as a family. We're even planning to head to Tahoe to play in the snow. It's going to be a magical, wonderful winter this year.

Also, I've been re-starting my acupuncture/accu-pressure (massage) complimentary therapy again. I might as well give it another try to help alleviate stress and keep my body, back and mind in balance. Ever since I started getting a massage done from a Groupon I got, I felt it helped me relax and distress me. So, I figure, I might as well take time to focus on me and healing on Wednesdays.

All is well with the kids. Emma and Ellen just finished their preschool for the year and now they are on winter break. Ethan's doing well in school now. I've enrolled them back into the Kumon program and they love it. Last week, they also met Santa and did arts and crafts at their school. They are loving the holidays and Christmas. Our house is all nicely lit up with lights. We're baking cookies, watching holiday movies and having lots of fun. Lots of Love.

Got the Cold, Cough Flu again

For almost a week now, I've been miserably sick and under the weather with yet another cold, congestion and unrelenting, hacking, phlemy cough. This time, the cough came back with a vengeance and just riddled my whole body with constant cough attacks. Kinda like a perfect storm of sorts, mixed with upset stomach, very scratchy throat, vomiting, chills, sinuses stuffed up and achenes. This time I was so sick, I took a sick day from work and stayed in bed pretty much all day Tuesday.  Sleeping was tough due to the constant cough attacks, stuffy nose, congestion and all that yuckiness (nasal drip).
I'm not sure how I got this cold/flu again, but it sure seems like whenever I come back from Stanford appointments on Wednesdays or from a weekend mall outing that I get sick by Monday. On top of the terrible cold/cough this week, my stomach was also recovering from some form of food poisoning (result of eating bad Chinese food from the mall since my 2 girls also had the stomach bug). Perhaps with the cold weather and with an already weakened immune system, I easily catch lots of germs. And when I do catch a viral bug, it's hideously unforgiving and inescapable! Lovely. I'm a germ magnet.

Definitely, it's no fun being miserable with this cold/flu combined with having lung cancer. It's just awful. If it weren't for the CT scan results from last Wednesday, confirming that the tumors in my lungs are now less dense and that Xalkori is working, I would have thought my cough is a result of worsening news from my lung cancer. Thank goodness for Xalkori.  I hope this cough goes away soon and it doesn't ever come back. Please don''t come back.

Radiologist Report of CT scan
The radiologist reading from my CT scan report pretty much confirmed what my doctor stated, except it was mixed news regarding the 2 tiny spots on my liver. The report stated that one spot conspicuously grew to 6 mm from 5mm and another spot that used to be 9 mm, now is 6mm. Regarding the tumors on my right lung, it states that it has "Decreased reticular nodular opacities in the right middle and lower lobes".  I hope in 2-3 months when I get another CT scan that the 2 spots are gone with this Xalkori treatment.

Side Effects less bothersome
Now that I'm on Xalkori for almost 2 months now, the side effects are a lot less now or not as bothersome. The trails of lights happens still a little bit, but it doesn't bother me quite much or it's not affecting my vision. I can still read, drive and see as normal.  The diarrhea, well, that's comes and goes without any warning. I usually don't take any anti-diarrhea meds for it, unless I really, really need to.

Back to Kumon
The kids are doing well. But I since I've been raggedly sick with the flu up and down and back up with another cold/germy bug, I haven't been working diligently with the kids with the academics and they're slacking off. Ethan's progress reports came home after the parent/teacher conference and needless to say, he needs more work and more help. Immediately, I called Kumon and had both him and Ellen scheduled for an assessment, evaluation and a strategy plugged in. He'll have to head right back into the program. He needs all the help to get back onto mastering the basics of reading and math. I tried all sorts of ways to avoid having him enrolled in Kumon since, he hates it and I hate having to always remind him to do his Kumon.  I tried printing study materials/worksheets online, math and phonics flash cards and workbooks, etc. But, somehow, the Kumon method works really well. So, back to the drawing board and this time, I really hope Ethan can gain good, solid grounds and get back on track on achieving reading, writing and math at his grade level. I'm worried about all of them falling further behind in school. 

Raising self motivated, educated, well rounded, self sufficient, independent problem solvers and thinkers is really a lot of hard work and takes lots of dedication. It's not easy. I guess in life, nothing is easy. But, with a lot of hard work, practice, focus, and training, the rewards are worth striving for.

Thanksgiving Plans
I can't believe next week will be Thanksgiving. It's creeping up so fast. Time really flies. If I don't get around to writing another post, Happy Thanksgiving everyone. We won't be heading anywhere or be out of town. We'll be right here in town, celebrating it with friends and family. Kids are all excited to start decorating the house ready for Christmas right. Turkey feast pre-cooked dinner is already all ordered in advance.  As always, I'm full of gratitude for being here to celebrate it with my family and friends and living life to the fullest.  Happy Thanksgiving!! Lots of Love.

CT Results after 1 month on Crizotinib

Yesterday was my usual follow up appointment with labs, Doctor and Xgena treatment and  thank goodness, my good dear friend R (Moanie) met me there at Stanford.  I'm so greatful for this big day of news with results and findings from my CT scan for her to be here for moral support, friendship and company.  I started the day working from home and then headed off to get my CT scan. This was the first time ever that I had scheduled my CT scan, Dr and treatment all in one day.  And I'm glad I did as it all worked out well. It's just easier now that I hardly drive during the weekdays now that I carpool to and from work. And also, getting poked once for scans, blood lab draws, getting flushed with heparin all about once per day is just ideal and just less pain and agony.

Other than the crazy traffic, congestion due to the rebuilding, expansion happening at the Stanford campus which will take about 5 years to complete, I was able to weave my way through all that madness on time.

CT Results
So, after lots of waiting, I finally saw Dr. Neal. He came up with a smile and said, "I have great news!  Let's take a look at the results of the images from your Ct scans today."  So we looked through the images together, with side by side CT images from Sept and he explained what the before and after image mean after about 1 month on Crizotinib treatment.  The images of my right lung now look so so much better than images from Sept!  He pointed out how dramatic the differences were, like how the tumors looked almost to be "melting" away. Definitely fantastic news. I was amazed to see the images and results.  The actual findings or study from the official radiologist reading will be coming soon to confirm the good news.  I'm just thrilled for great news that this pill is working. I hope it keeps on working more and more to melt all the cancer tumors away so that I can one day be cancer free. That would be the ultimate dream come true.

Busy, Busy
Work, kids school studies, their activities as well as my additional "to do" items around the house seems to keep my super busy. Since the last post, while I had the flu, I ended having take antiobiotics for 9 days so that I could shake off the miserable cough and fever. I tried letting my body fight it off, and after 3 days of fevers and coughing my lungs to point it started to hurt, I had to resort to antibiotics. And it worked like wonder!  But, as soon I was out from the flu, on a Friday night 2 weeks ago, when I took my usual Crizotinib pill at night before bed, the unthinkable happened. The pill got stuck in my throat or esophagus, burning like crazy all night! I was in mierable, miserable pain all night and all of the weekend, with the most brutal heart burn and acid reflux all day long.  It probably worse than labor pain.  I couldn't really eat or swallow much except water and light soups for 3 days until it finally subsided.
And of course, when this happened, I made calls to my primary care doctor right away to see what I can do. I took Zantic and tried everything.  Oh, when I had the flu, I drank lots of Orange juice, and even tried the old fashioned Vietnamese "saum" where my nanny boiled ginger, lemongrass, etc and then I would "blanket" myself with this boiling, steaming hot pot of water so that I can "sweat" off all the viral germs.  I did this a natural remedy to try to fend off the fever and cough, but to no avail, it didn't help.  I guess this method is like sitting in a sauna to sweat off bad germs. Perhaps I tried this method a little late in the game and it didn't work. And thank goodness for good, modern medicine. And yes, while having this miserable cough and cold for 2 weeks, I worked the ENTIRE time and never took a sick day.  I did work from home 2 days straight.  I guess I didn't want work to pile up and with taking the meds, it helped me get better each day as I was fighting this flu off.

The kids are doing great! Emma's attending preschool 5 days now and their dance and soccer is coming to an end next week. For now, with the upcoming holidays, I may just want to hang out with them in the weekends as a family and enjoy being toegther; without overdoing myself and them with too much activities.  We'll see, since they already want to start Karate, cubscouts perhaps for Ethan, and maybe even swimming and or piano lessons.
I'm just overjoyed and delighted with wonderful news from Dr. Neal about my current treatment. Hoping for continued good progress. Lots of Love.

Caught the Flu bug

I'm feeling a bit miserable today, but a little better than yesterday. My guess is that I caught this bug or cold flu from my kids since they had it about 1 week ago. All of my 3  kids had this cold and cough and finally when they are coming out of it, I have it. Initially this cough and cold started  Friday night when we were driving down to Los Angeles or Anaheim, and by Sunday, my cough grew much worse, with a very bothersome hacking constant cough. In a way, I'm glad it didn't manifest itself until Sunday since all of Saturday, we are at Disneyland and I'm glad I was able to enjoy the whole day with them.  We had an incredible time.

But by Monday morning, this flu like bug grew worse and I had to head out of work and drive myself home to rest. (My carpool buddy has been sick lately too this week.) By mid afternoon, I started to get a fever and chills.  Under the advice of my doctor, I took some cold/cough medicine and a Tylenol.  Today though, I'm feeling still sick but much better and no more fever. I did however called into Dr's office to advise them of this and to see if I should continue taking all these over the counter cold medicine along with my daily twice per day Crizotinib. They advise to to continue it and then just keep them posted and if necessary, they would prescribe an antibiotic. But, so far so good. I'm going to let my body fight it without the use of antibiotics.

As far as getting the flu shot, yes, I did get it about a month ago. And guess what, even with the preventive measure of the added protection of the flu shot, I still end up getting it. Oh well.

The Last Lecture
In my free time, I've been trying to squeeze in some time to read this amazing book by Randy Pausch, called "The Last Lecture".  You can check out his book here at http://www.thelastlecture.com/. It's really truly a testament to his wisdom, strength and inspiration as he lectured and shared his thoughts and advice to his students about life and living life to the fullest, even when life throws at you, a devastating, terminal illness. I think this was the book that all along, I've been researching and wanting to read so that I can learn how to write something similar for my own kids. But in a way, if he's already written this so well, this book is a must read for everyone as well as for my own kids someday.  I won't need to reinvent the wheels. I can't wait to finish reading it.

Other than being sick, I've trying to drink plenty of liquids, green tea and get plenty of rest. The kids are doing well. They had a fabulous time at Disneyland over the weekend on Saturday. Their Halloween costumes are all ordered and set to go. Hopefully my carpool buddy gets better too so that I can resume our carpool arrangement.  Lots of Love.

Xalkori - day 10 Update

I've been on Xalkori for 10 days now exactly.  I still experience the visions issues, gastro-intestinal ( heart burn/ burps), both diarrhea and constipation (which comes and goes), major taste changes where everything tastes either mediciney with a twitch of bitterness and now a little decrease sense of appetite, which is new.  The vision only bothers me a bit in the mornings and evening.  And so to avoid nausea issues, instead of taking it first thing in the morning on an empty stomach, I take it at either10 am or either right before lunch or after lunch. Exactly 12 hours apart as I've been instructed. But this 12 hours apart gets tricky if I take it after lunch since if I follow the 12 hours apart rule, it makes it really hard to get out of bed at like midnight to take it.  Besides the timing part, really, it's almost impossible to remember to take it at midnight, let alone, getting out of bed half asleep to take it.

And as predicted,  like yesterday, since I got home from work so late (8:30 ish PM), after a light dinner, reviewing kids homework, reading to kids, I was so tired, I went straight to bed at 10PM ish and just simply forgot to take it.  Before I know it, by noon the next day, I finally realized that I had forgotten to take one last night.  Oh well. Can't double up on it as its a very toxic pill. I have to find a better time so that it's easier to remember or put it on an alarm alert on my phone to notify me.

On another note, I'm noticing a little scratchy patch of itchy rash on my left leg, but it could be due to a little bug bite..I'm not really sure what it is.  Could be due to me working on the vegetable garden and or being out and about in the yard? Hopefully it's not an reaction or indication that I'm allergic to this new treatment as that's the last thing I want happen.  I mean, this Xalkori pill, it represents all my hopes and dreams for continued good health and stability, if not the MIRACLE pill to being cancer free that I'm daily wishing for .

Patience
Anyways, I've noticed that my energy, alertness, enthusiasm, and endurance are all so much more keen.  I mean, I'm happy to report that I even sense my mind, and my critical thinking skills seems clearer and sharper these days. Maybe Xalkori is helping and it's doing its power punch prowness in destroying the cancer cells. At least that's the hope.

Aside from the side effects, I've also notice that my patience seems to be growing quite short, my criticism, cynicism and temperament seems a little on the short fuse side too.  This is unusual for me since I'm usually pretty mellow, easy going, quiet, mind my own business and go about doings things nicely, warmly and kindly.  I've always been a go get it done sort of type A personality.

Thus, noticing this tiny change, I'm tyring to remind myself, to stop and resist adding "my own snappy editorial" comments responses to those who do take care of me (customer service, nurses, etc).  Hmm, I wonder if this little bitty snappy side of me has anything to due with this drug.  Or could it be due to aging, stress, having less free, quiet, down time for myself, and trying to be in a hurry all the time and having to always ty to balance/keep up all the balls that are constantly in the air.  Hmm, or could it be all of the above, which makes perfect sense as it's hard to keep it all afloat.  Regardless, I need to slow down and remind myself to be kind, gentle, caring, respectful and treasure and take in all the moments and beauties of life that surrounds me.

The SAMFund Grants & Scholarships, Moving Forward With Your Financial Health: Health Insurance 101: Understanding the System and Your Rights

I found about this website while catching up on my nightly reading about lung cancer news and research.  It's a wonderful organization to help those who are young adults move forward with their lives after cancer.  I don't qualify for this program.  However, it is hosting a very informative webinar, like "Moving Forward With Your Financial Health: Health Insurance 101: Understanding the System and Your Rights", which I've already signed up to join.  For more info on this webinar and about this organization, follow it at http://www.thesamfund.org/pages/news.html.

Latest news and condolences on to my online NSCL fighters
With being so busy, it's taken me a little longer to catch up with my nightly reading of blogs, emails, and latest Non Small Cell Lung cancer news. This week, when I did login to read on some fellow NSCL cancer bloggers, I was hit with shock and disappointment.  Reading their latest blogs, with heavy heart that I shockingly learned  that both of my fellow online lung cancer fighters, whom have given lots of hope and inspiration, Lori Hope and Mike Baker, http://www.mikebakereducation.co.uk/beatingcancer/, have lost their fight against this horrible disease. I couldn't believe it. Its maddening. Saddening. Two wonderful humans.Writers, public speakers. Both of them each, did amazing work in bringing more awareness and to research to lung cancer.  I'm at a loss for their families and to society's loss. It makes me realize how quickly life changes.  How fragile life is, and how in an instant, things can be forever changed. Gone. In an instant. Just like that.

Makes me Pause
Hearing about their news, like a tidal wave, it hits me hard, that I too, need to stop, think, and again and again, re-evaluate my priorities of what is really important to me. Questions like, should I work or not work, the whys, the digging deeply down under of the purpose of my life, of what I really should do with the time I am here.  As my doctors say, I have a terminal illness and it's unfortunate, but questions like these, like a shadow, is constantly on my mind and heart.

More specifically, I know beyond any doubts, that at the end of the day, its ultimately spending time with and being with my kids, family and friends that makes me most happy and means the utmost importance to me. I mean, like the saying goes, "no one, when their sick, laying on their bed, would say that, jeez, "wish they had spent more time at the office." No. Absolutely not. Everyone will most likely agree that they would want to spent more time with loved ones, living and enjoying their life to the fullest.

Emma 3 years Birthday!
 Speaking of family, I'm excited to say that I'm so full of gratitude to be here to celebrate my precious and youngest daughter, Emma turning 3 years old tomorrow!  She's already hand delivered her "Dora" invitations to our neighbors last weekend and picked out her cake.  We'll be looking forward to celebrating it with friends/family this weekend (after dance and soccer classes). 
As our gift to Emma, we'll also be celebrating it with a little extra kick by taking her and all of us to the wonderful, magical, most Happiest Place on Earth at Disneyland soon! Hotels and dates are all full swing and reserved. I'm super delighted and excited. Looking forward to creating more special adventures and precious memories!  Lots of love.

9 days on Xalkori

I've been on Xalkori for 9 days now exactly.  I still experience the visions issues, gastro-intestinal ( heart burn/ burps), constipation, taste changes and now a decrease sense of appetite, which is new.  The vision only bothers me a bit in the mornings and evening.  And so to avoid nausea issues, instead of taking it first thing in the Morning, I take like either at 10 am ish or after lunch and nights. 12 hours apart as I've been instructed. But this 12 hours apart gets tricky as if I take after I eat lunch..then it makes it hard, waking up at like midnight to take it again.  And so, like I guessed,  like yesterday, since I got home from work so late (8:30 ish PM), after a light dinner, reviewing kids homework, reading to kids, I was so tired, I went straight to bed and just forgotten  to take it.  Before I know it, by noon the next day, I finally realized that I had forgotten to take one last night.  Oh well. Can't double it as its a very toxic pill..so, I gotta find a better time so that it's easier to remember.

On another note, I'm noticing a little scratchy patch of itchy rash on my left leg, but it could be due to a little bug bite..I'm not really sure what it is. Hopefully it's not an reaction or indication that I'm allergic to this new treatment.  My energy, alertness, enthusiasm, and endurance is all good and happy to report that I even sense my mind, and my critical thinking skiils seems clearer and sharper these days. Maybe Xalkori is helping and doing it power punch prowness in destroying the cancer cells..at least that's the hope.

The SAMFund Grants & Scholarships, Moving Forward With Your Financial Health: Health Insurance 101: Understanding the System and Your Rights

I found about this while reading about my reading of lung cancer news and research.  It's a wonderful organization to help those who are young adults move forward in their lives after cancer.  I don't qualify for program, however, it is hosting a very informative webinar and has lots of past info on issues like "Moving Forward With Your Financial Health: Health Insurance 101: Understanding the System and Your Rights". More info and sign up for their web innards can be found at http://www.thesamfund.org/pages/news.html.

Latest news and condolences on to my online NSCL fighters

With being so busy, it's taken me a little longer to catch up with my nightly reading, emails, and latest Non Small Cell Lung news. But when I did login to read, it is with heavy heart that I shockingly and sadly learn that my fellow NSCL fighter blogger, Lori Hope and Mike Baker, http://www.mikebakereducation.co.uk/beatingcancer/, have lost their fight against this disease. I couldn't believe it. Its maddening.sadenning. Two wonderful humans, writers, public speakers, did amazing work in bringing more awareness and to research to lung cancer.  I'm at a loss for their family and to society's loss. It makes me realize how quickly life changes, how fragile life is, and how in an instant things can be forever changed or gone. Just like that.  

Hearing of this sudden loss, I, too, pause and like a tidal wave, it hits me hard, that I too, might need to again and again, re- evaluate my priorities of what is important to me. Questions like, should I work or not work, the whys, the digging deeply down under of the purpose of my life, of what I really should do if, like as my doctors say, is the fact remains i have a terminal illness..and it's unfortunate. But, 

6 days on Xakori - Side Effects, Carpool, Moon Festival

It's been officially 6 days since I've started my new treatment regimen, taking the daily pill Xalkori twice per day.  And within the first 2 days taking it, all I have to say is, OMG-(Oh my goodness), the side effects hit me pretty quickly.  Granted, it's not chemo infusions, but technically, it is still a form of chemo in a way, but in a pill form.  So far, I've experience ALL the major side effects being on it as my Dr. warned me about. 

Some of the known side effects that I have experienced are:

• Vision problems (Blurred vision, double vision or increased sensitivity to light)
• Nausea
• Diarrhea
• Vomiting
• Constipation
• Fatigue
• Decreased appetite
• Dizziness
• Increased liver enzymes (at least I feel my liver working a bit harder)
• Numbness or tingling in extremities
• Taste changes
• Heartburn

The vision problems started right away and then the nausea, vomiting and diarrhea hit me by day 3 (Thursday, Sept 27) pretty hard as I had to run as fast as I could to the bathroom practically all day long. No fun. By end of business day, Thursday Sept 27, a little concerned, I quickly called my Dr.  But, by Friday, Sept 28, after I learned to take it with food or after I ate a meal, nausea, vomiting and diarrhea just stopped completely. But, it was comforting to be told by my doctor that it was safe to take some over the counter anti-diarrhea medicine for it in the future if it was needed. However, after day 3, I think my body is slowing adapting to this medicine better as I don't experience those initial side effects anymore; except for the vision, heart burn and taste changes issues.

Carpool buddy
As for the vision problems, that is little bothersome, but it's not so bad as it only occurs in the morning and at night when the light changes.  As far as driving goes, my Dr said it should not effect my driving ability and that it is safe for me to drive.  Fortunately even before I started taking this Xalkori pill on Wednesday, luckily, while having lunch with a coworker on Monday, Sept, 24, my coworker asked me about carpooling to work since we live practically less than .5 miles from one another.

So after that lunch discussion, we immediately started to carpool the next workday.  So far, we've carpooled to and from work for 1 week already and it's great! And, my coworker offered to drive from now on too since his car is smaller and gets better gas mileage. So cool. I love it. No longer now do I have to drive, sit in traffic for over 1 hour to rushed into work every morning and I get personal pick ups and drop offs right at my house everyday, 4 days per week (I work from home on Wednesdays). This is perfect! Especially now that I have sensitivity to light and changes to my vision with this drug, this works out wonderful. And yes, to be fair, I do help contribute towards some gas money, but its nominal. Hurray for carpool. What's also cool about carpooling is that it benefits the environment; with reducing emissions. Furthermore, another plus is that I get to be home a little earlier too since we can utilize the carpool lane. What a concept.  Good deal.  I hope we can keep this carpool arrangement going for a long time.

So far I'm getting used to this pill regimen and I think it's starting to help...but perhaps it's too early to tell.  Keeping up my daily wishes that it will do a miracle for me.

Moon Festival
Other than the usual business with work and kids, I was able to help my family/parents resolve some difficult personal, financial matters (by staying up late every night this past week, until the wee hours), researching, reading and gathering info and emailing with my advice) and I'm happy to say that I was able to help them out.  And the solutions we've came up with are getting resolved, but more work for me to do too to continue help out.

As for family time, last weekend and this weekend, the kids and I were happy to celebrate and attend some Moon or Mid-Autumn festivities with friends.  The kids had a blast, getting their faces hand painted with little characters, winning prizes while playing some fun kid carnival games, seeing the lion dance, getting moon lanterns and spending time together as a family.  And of course, on Saturdays, the girls love to attend their dance classes and Ethan is doing so well with his soccer.  He loves playing soccer and is good at it. I'm glad he likes it as it's great physical exercise.  Happy Mid-Autumn everyone. Cheers! Lots of Love.

Long Awaited Ordeal of getting Crizotinib- over 3 weeks and counting

It's been a little over 3 weeks now since I have not gotten any sort of treatment and I'm just getting really concerned of how my body is dealing with all the cancers that's multiplying by the millions and growing rapidly everyday without treatment. Even though my Dr pre approved for this pill months in advance, there's been lots of red tape in getting this in my hands. And yes, I've been following with this from the beginning since 2 weeks ago when my Dr discussed with me to switch treatment regimen.

 At first, my nurse & Dr team said (on Wednesday, 9/12), it's all approved and all I have to do was wait for it to be delivered to my doorstep within a couple of days, latest by Monday 9/17). By Friday, Sept 14 when it didn't arrive, I already placed a call to my nurse thinking perhaps I can pick it at my local pharmacy instead. But they had told me, it's not an ordinary kind of drug or prescription and so it's a required specialty drug that has to be ordered and mailed and so sit tight, it should arrive soon by Monday or Tuesday.

 But by Wed morning, Sep 19 when it did not arrive, I started making my own calls...soon enough I was told my insurance provider doesn't even carry that kind of drug and so I had to register or call other providers to like Caremark to try to fill it. After 1 hour, and more calls to my nurse, it was sort of complete. Or at least everything was all handled...however, by Thursday, I received another call stating from my assigned specialty drug case manager of CVS Caremark that they too could not fill it and that I have to call another place like CVS CuraScript again and get the prescription faxed over again!

By then, it was to Fri, Sept 21 and by morning, I was told, they are still trying to process the approvals through my insurance and until that's complete, there's nothing further I need to do to get this shipped to me.. And yes, I was very adamant, and did stressed to everyone, that this drug is super urgent and to please put the highest priority on getting this delivered next day ASAP!

So yup, this whole ordeal is worrisome and I feel so hopeless...I really need to get treatment, fast and furious, like, now!

 But, Monday, Sept 24th came and the first thing I did was call my insurance, Caremark and CuraScript to find out what really is the holdup.

 Soon enough, after urgent phone calls over and over, I was able to get my insurance to rush approve this and for both places, whether it's CuraScript or Caremark to RUSH this overnight deliver and fulfill it ASAP for me. AND finally...it arrived by Tuesday, Sept 25!! Yay and halleluyah!!

I actually had to track it down and call CuraScript for where it was delivered to and who had signed it off as by 3:30 PM, I still hadn't gotten it...so after some more running around, searching for whoever signed for the mail, I finally got it in my hands..

I am so glad to have this Xalkori now and have already started taken it for 2 days...so far so good. Like usual, life has been hectic and very, very busy for me and my family..the kids are doing well. All 3 kids are doing very well in school and they all really enjoy it. I've met all their teachers, did the back to school night event, and everyday, after work, like routine, I always spend time with each of them with their school work, interacting with them and talking to them to see how each of their day was like.

Now, let's have this drug, Crizotinib (brand name Xalkori) do its miracle and make me all healthy and cancer free soon! Lots of Love.

Been super busy-new Treatment, CT Results

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.

Disneyland Fun, I'm an ALK Mutant!, Ethan's Birthday

Last week, we were off on vacation at the magical Disneyland park in Anaheim, CA. What a magical place and vacation it was. Although it was incredibly hot, super crowded and waiting was a bit hard with the long lines, we had a awesome time. The girls got to meet all the Disney characters up front and close during the parade and we were amazed to see them in person. We were there for 4 nights and loved hanging out as a family, spending the best of times with the kids. We swam in the pool at the hotel, visited with family on Saturday and spent two days at both Disneyland and CA Adventure. We even got dinner reservations at club 33 at Disneyland as shown above, but once seated, sticker shocked, we couldn't really stay for dinner. Besides, the kids wanted to explore of Disneyland and didn't want to waste anytime sitting at a fancy dinner.
When we had to pack up to leave, my daughter, Ellen, was sad to have to say goodbye to Disneyland and leave the hotel. At 4 years old, she already enjoys room service, traveling, staying at a nice, fancy hotel and eating out at nice restaurants, as she states, "Mommy, I like staying at the hotel and being a princess!"

Ethan turning 6 years old Birthday
By Tuesday, we drove the 6.5-7 hours drive home and we were just so tired from all the all day walking and were happy to be home. We were back just before dark and glad to have some real good old Asian food.  We planned the trip so that we would be back for my regular Wednesday treatment. And, just like clockwork, on Wednesday, with labs good, I had my regular Gemcitabine chemo infusion treatment.

The rest of week, since we were off, we were tasked with errands for the kids back to school and getting the house and supplies ready for Ethan's turning 6 years old Birthday. We had a good turn out with good friends and family coming to celebrate with us on Saturday. I'm so glad and full of gratitude for being here to celebrate Ethan's turning 6 years old Birthday and spend just an amazing summer with the kids. Ethan had the best, wonderful birthday ever where he helped pass out and hand deliver some invitations to our neighbors, picked out his jumper character and cake and finally celebrated the entire day with lots of friends. Happy Birthday Ethan! We just love so much and here's to many more wonderful Birthdays to come!

ALK Mutation
So the week before I headed for vacation, I asked my Oncologist, Dr. Neal, about the percentage of the ALK mutation results. I really thought that I was negative for it the last time he mentioned it as he said he wanted me to continue with the Gemzar chemo treatment. But, was surprised to learn that that according to the pathology report,  my tumor has over 90% ALK mutant match!  That means that I can take the FDA approved pill Xalkori or Crizitinib pill. He even stated that my insurance already preapproved it too. However, he said that since Gemzar has kept me stable for over 9 months and it seems to be working to keep it at bay, he wouldn't recommend me switching it just yet. Also, he states that since I have brain mets (which we have been treating with Cyberknife and watching it closely at every 3 monthly brain MRI scans), that chemo is more effective at preventing further brain tumor metastasis. He said that Xalkori isn't so good as a brain barrier. At on the other hand, Xalkori is the next line of treatment that we would try next when and if Gemzar chemo stops working.

For some patients on Xalkori who have lung cancer, it has done miracle remissions.  So, hopefully when I do take it, it will be the miracle pill that I've been wishing and praying for to keep my healthy and living well! Lots of Love.

Vacation Fun! I'm a ALK mutant

Thoughts

Today was my week off from chemo and I got busy getting lots done, from work, to errands, and visiting a new preschool for the girls to attend. Personal business, like submitting reimbursement claims, and even gathering info together to fax, complete forms etc, take so much time and energy to get done. Speaking of time, time seems to pass by so fast. And time is so precious as I try very hard to magically think my way into being healthy. Wishful thinking,that I could just be cancer free...but I'm not. And so every morning as I get up, I'm just thankful for that day. But, it's a hard to not think about my time here being cut short. It's so unfair to my kids, so unfair & so unlucky that I have what I have. Death, dying, it's always on my mind. I struggle almost everyday, wondering if I really should be "working" or be at work nowadays as my time seems better spent with my kids. I enjoy work and it feels great to have a "normal" routine and it feels good that I am contributing towards society, contributing towards my

Thoughts

Lately it's been really hard trying to not think about death, and dying. Not a day gies

Update

This past Wednesday, I saw Dr. Neal, and got chemo treatment with Gemzar. Nothing unusual, and my once every 3 weeks appointment with him was very quick. I"ll see him again in 3 weeks. I"ll be back next Wednesday for chemo again. I know, my chemo regimen is 2 weeks back to back, with 1 week off and then back again. It's never ending...Grueling cycles. Wishing for a miracle to happen everyday for the cancer to disappear. As for me, keeping busy as usual with the kids, work and enjoying every moment with the kids. Life gets busy with the everyday tasks, and I have to start planning our Disneyland family vacation soon as well as the kids preschool registration for Fall. Been busy working with kids on their academics everyday after work in the evenings which is a lot of hard work!lots of love.

Busy July 4th

Family Fun
Finally, after months of back to back weekly appointments every Wednesday, I was happy to have yesterday off both from Chemo and work to enjoy the July 4th holiday with my family and friends. We took the kids to Girloy Gardens for about 3 hours and then it was time to head to a friend's place to enjoy a yummy BBQ. The kids took a brief nap before waking up to play with kids their age at the BBQ.  It was really nice hanging with the family and seeing friends. Later towards the evening, we all ventured out to see a spectacular 20 minutes of Fireworks show at our local SJ Giants stadium.  By the time we got home, we were super tired.  Despite being so tired today, I had to get up early to get into work to do a presentation webinar training and do some work the rest of the day.   Like any parent, instead of spending most of my time at work, in the back of my mind, I really wish I was at home, hanging out the kids and spending time with them.

With our nanny off yesterday and today, and with the kids being so tired from being out so late, they took today off from their summer preschool and school camp today to hang out at home with their Dad. I'm glad they had today off to just rest and relax.

ASCO Conference 2012 Review, Thursday, June 28, 2012
I do lots of reading on the latest news, treatments, trials, genetic mutation and information from Grace and http://blog.lungevity.org/category/podcasts-webinars/.  In the next few weeks, Lungevity will post the annual program on the highlights in lung cancer from the annual ASCO conference, produced by GRACE in partnership with the LUNGevity Foundation, featuring my own oncologist, "Dr. Joel Neal, Assistant Professor from Stanford University.  The topics included a summary of the results and implications from the newest and most important new studies being presented at ASCO, the largest oncology meeting of the year. 


I really find the audio and video podcasts really informative. As for mutation or markers on lung cancer, I find listening to this podcast at http://blog.lungevity.org/2012/06/07/sm-markers-pts-5-6/, really helps explain  all the mutations on advanced lung cancer.  I'm going to ask Dr. Neal about these markers. Lots of Love.

Happy July 4th

Atlas, it's Friday. I'm so glad the weekend is coming since it's been a pretty busy week. I did work from home on Wednesday and then head into Stanford for my chemo Gemzar treatment. Aside from coming there almost every week, I've been feeling pretty "normal". When I do go there, it always makes me feel so sad and so helpless that I have get poked and get treatment. The taste of saline and heparin before treatment and then after treatment is just so yucky that it makes me a bit nauseous. Chewing on some candy or a granola bar helps distract the taste a little bit. But, I just can't wait until I can just take a pill and have it shrunk my tumors. I'm tempted to ask Dr. Neal to switch me over to the Crizotinib pill.

LDN

When I got home, I was just so tired, after dinner, the kids and I went to bed at 7:30PM.  I can feel that my body is getting so tired of chemo. Been reading on some other methods that some readers kindly wrote to me on how they've fought their stage 4 NSC lung cancer. It's an amazing story on how this one woman, Celia Danks is taking something call LDN to keep stabilizing her Non Small Cell Lung Cancer. You can read more about it at http://www.ldnscience.org/low-dose-naltrexone-ldn/ldn. When I read about this, it states that LDN is, "FDA-approved naltrexone, in a low dose, can normalize the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.".  I'm going to read more about this and ask my doctor about this.

Another treatment I'd like to ask my Doctor about is Immunotheraphy. There's been lots of trials on this and I'll have to keep looking to see there are trials in the area. Check out the list of Immunotheraphy trials shown below. 

When I read discussions on how others on Inspire (an online support group), I also learn on this one post http://www.inspire.com/groups/lung-cancer-survivors/discussion/cancer-is-not-invincible-there-are-options-for-stage-iv-or-all-stages/, that discusses about this same LDN medication to fight off cancer.  It also mentions a third medication call "Metformin, that can cut off the cancers food supply - which is glucose. Cancer basically eats sugar. Without it's food, it can be weakened and/or killed off. This medication Metformin, can be used for any type of cancer and does not have to be tested for. The only requirement is that your kidneys are working and not too badly messed up.http://www.lef.org/magazine/mag2012/feb2012_Can-Diabetes-Drug-Prevent-Cance r-Death_01.htm?source=search&key=METFORMIN. "

I'll have to do some reading and bring it along at my next Dr. appointment to discuss with him about the benefits of these anti cancer medications.

All is well with me, kids, hubby and our 2 dogs. After the kids last dance, swim and Kumon lessons this coming July, we'll going to take a break from their weekend routine classes and Kumon, and enjoy out weekends just relaxing and doing fun things together.  It's been sort of crazy with the hussle and bussle of always trying to pack them up to go to class for the past 6-7 months of dance, gym and swim lessons. Lots of Love.

CT Results, Alk, ROS1 Results

This past Wednesday, June 20, I went back to Stanford for my routine labs, Dr appointment and infusion. This was the big Day where I awaiting to hear results from my latest CT chest, abdomen, pelvis that I just had gotten done and also to see findings of my ALK and ROS1 mutation results. The day started so busy, as normally, on Wednesday, I would have stayed home and not head into the office.  But since we're so busy, I got up early to head into the office to have a breakfast lunch with the team and our business partner. After that, I head into the office to get on a conference call meeting and then, it was almost noon and I had to go pick up my good friend, Moanie to come along with me to my Stanford appointment. I'm so glad she's able to come along with me for this big day of news from my Dr.

Results
It was a pretty hectic, crowded day throughout the day as it was packed with patients. Luckily the staff who checked me knew me and I didn't have to wait in line.By now, it's about 12:30 already and feeling so hungry, we took a stroll over to the cafeteria to grab lunch, knowing that sitting in the lobby waiting, it would probably take awhile.  It was perfect timing as when we're done with lunch, I was called in to see Dr. Neal.

After some vital signs were taken by the nurse, I saw Dr. Neal. He gave some good news that the results from the CT scan shows that things are all pretty stable and that he recommends me to stay on the current chemo treatment. As for the ALK mutation, he says the latest pathology report indicated that it's not an exact match and that it only shows some ALK like similarities. However, he's still going to prep the initial paperwork and authorization from my insurance to get it approved to allow me to take Crizotinib at some point later if needed. He says that if I were to take this pill, it may or may not be effective and that it doesn't pass the brain barrier. In other words, Crizotinib isn't very effective at preventing brain metastasis, that if it works against stabilizing my tumors on my lungs, it won't stop it from spreading to the brain.

As for the long awaited results from the ROS1 mutation, I'm negative, I don't have it. But, Dr. Neal says, it's actually better if I do have the ALK since Crizotinib is the same pill to treat it and it's FDA approved.

EKG
As for my rapid heart beat, it was a little at 102 and 3 weeks ago, it was at 75. This was probably because when I first came in, I had just taken a short walk. So to see what's going on, I was given the EKG test. The results from that came out normal at 92 beats. With drinking less coffee, I'm feeling a bit more "normal'. But, still I'm concerned at what's causing fluctuations with having heart palpitations.  Results from my thyroid labs shows that it's in normal range as well.  Since I'm feeling good, we'll just keep an eye on this and if needed, I may need to see a cardiologist.

Overall, I'm feeling pretty good and keeping busy with work, exercise and the kids at the usual routine activities. I'm just so thankful for stableness and for great support from family, friends, coworkers and neighbors.Lots of Love.

Cyberknife done

This past Friday, June 15, I completed my Cyberknife radio surgery to treat the one new tiny lesion that my brain MRI showed. This procedure was quick and painless and I didn't even take any of the prescribed premeds, like the anti nausea and the steroid. Good thing I didn't since the steroid would have made me more jittery, hyper and I would have stayed up late not able to sleep. I tried to move this procedure to next week and have another week off from chemo. But, they said, moving it an extra week required me to redo my brain MRI again. And since I really dislike a repeat of another brain MRI, I kept my cyberknife treatment.

Last week was a week full of Stanford appointments where I went there almost everyday on 3 separate days plus another doctor visit on Monday to see my primary care doctor, which made it 4 doctor appointments in one week. Yikes. I also had my CT chest, abdomen and pelvis done. I don't know the results yet until I see my oncologist, Dr. Neal on Wednesday.  Will post results as soon as I can.

Cutting back or out caffeine
For a few of my appointments and scans, I had to fast and not eat beforehand for at least 2-3 hours ( I had 2 7AM appointments). So, for 2 of those morning appointments, I didn't drink any coffee and for most of the day, I didn't have chest pains or heart palpitations. My rapid heart beat pretty much was gone or I didn't feel the many episodes of it all throughout the day like I did for the past 2 weeks where I had coffee every morning. Hmm, I hope cutting out the coffee or caffeine works and I won't have these rapid heart beat issues anymore.  I really want to head back to my gym workout routine again, but it's hard with work getting so busy.

Happy Father's Day
Today is Father's day, and I want to wish all the Father's a wonderful, Happy Father's day! To my hubby, Happy's Father's day and thank you for all your support, love and help with being an awesome Dad to the kids! Thanks for all the hard work with being there for them and caring for them.

The kids are doing great with their activities. With the hot weather, the kids especially love their Sunday swimming lessons. Emma and Ellen will start their summer school sessions next week and I hope they will enjoy it. I'm a little nervous for Emma since it'll be her first day ever at going to preschool..Lots of Love.

Brain MRI Results, Raid Heartbeat

Last Friday, June 8, I woke up early to get my 45 minutes of Brain MRI and then drove over to the Stanford main hospital campus to meet with my neurosurgeon and radiology oncology to go over the findings. Of all scans, the brain MRI is the once I dislike the most due to the loud knocking sounds and having to stay still in the "dungeon" donut circular machine for so long and laying straight on your back on the hard surface for so long and of course being shoot up yucky contrast via my power port. 

MRI Results

I haven't officially read the results from my brain MRI scans, but from what the neurosurgeon and radiologist's discussion with me, it's good news and bad news. The good news is that from an initial look at the scans, my neurosurgeon, Dr. Chang, told me that the 7 spots of lesions that I was treated on from the Cyberknife procedure done back in March, look pretty stable. However, he does see 1 small, new lesion spot. Him and the radiologist oncologist gave me some options to A) do a wait, watch and see approach and in 3 months do another scan or B) do another 12 minute Cyberknife radiotheraphy on the spot to zap it away to prevent it from further growth.  The sooner the treatment, the less the risk and the more effective the Cyberknife radio-theraphy would be. So, after discussing it with my hubby, (I went alone since he had to take the kids to school) and also I had to head right into work afterwards, we decided to get it treated.

So, this week, I'm all schedule to come in early at 7:30 AM Thursday to re-image my brain at closer impression to see if there's more tiny spots that could be missed and then get it treated with the Cyberknife on Friday.  As usual, I'll head right into work afterwards like last time. 

Rapid Heart Beat

One other effects that I've been experiencing is the rapid heart palpitations or heart beat. I've been feeling this for the last 3 weeks and finally I went in to see my primary care doctor today. He confirmed that I do have it and wants to me to move up my chest CT scan to see what could be causing it. So, I'll be heading to Stanford early at 7AM for it tomorrow. It's very discomforting, having to feel like I've ran a marathon or ran up a couple flights of stairs, throughout the day.  I told this to my thoracic oncologist, Dr. Neal about this side effect 2 weeks ago and again to Dr. Chang too; my neurosurgeon and since they are all specialist in separate fields, I really had to get it checked out by my primary care doctor. I hope we find out soon what's causing this and hopefully get it treated.

My concern is that sometimes with prolonged chemo infusions, it can cause congestive heart failure. Google this and this is what I found. "Heart failure doesn't mean that your heart has stopped working, or has "failed." Heart failure means that the heart is not pumping blood through your body as well as it should. "

I moved my CT of my chest, abdomen and pelvis for first thing at 7AM tomorrow so that my doctors can find out what's going and if the current chemo treatment if working. I'll post results as soon as I can. Most likely, my oncologist, Dr. Neal, won't tell me the results until next Wednesday when I see him. But, at least my primary care doctor, Dr. Shen will find out what could be causing my rapid heart beat.

I'll leave it to my team of doctors to help treat me. If anything happens, I just wanted to always say that I'm so thankful for my family, my kids, my friends, my neighborhood friends, my wonderful team of colleagues at work and for everyone's support.  I'm so blessed to have a wonderful husband and for my beautiful kids. Like any mom, I'm just so sad to have what I have and that I may not be there to see, protect, nurture, lead and be there for my kids for their future..

In any case, I'm still fighting as hard as I can and praying for all the best, for a miracle every day...Wish us well. Lots of Love.

Got Chemo last week

Last Wednesday, May 30 I did qualify to get chemo. My good friend, Liz also came along to offer support. As always, I'm just thankful for my good friends who can come along with me at least once a month to keep me company and for moral support. I wasn't even sure I would qualify for it since I've been feeling just a little weak and some anxiety since I've been feeling a little bone, back and right chest achiness everywhere. Perhaps with the announcements of a few fellow lung cancer survivor member's sudden passing, I've been a bit more worried myself. Not only that, since I've been getting more frequent "hot" flashes and especially with the little pain on my right shoulder blade and bones, something tells me that perhaps this chemo regimen may not be effective any longer. So due to these symptoms, instead of waiting until July to do a CT scan, my Dr. has asked me to do one in the next 3 weeks.

ROS1 and ALK Mutations

When I saw my Dr, he mentioned that we're still awaiting mutation results for the ROS1 and possibly another second opinion at re-looking at whether I could have the ALK mutation. Hmm, I really hope and pray that miraculously, I do have one of these lung cancer known genetic mutation so that I can qualify to take the FDA lung cancer treating pill called Crizotinib, brand name Xalkori.  If I have the ROS1 mutation, he mentioned about entering a trial in Southern CA so that I can participate in order to take the same pill, Crizotinib. ROS1 rearrangements tend to occur in younger, non-smoking NSCLC patients and that clinical trials shows that ROS1-positive NSCLC patients may benefit from crizotinib therapy. 

Prayers

 Wouldn't that be a miracle that I can take this pill and become cancer free someday just like many other Lung cancer survivors!? I'll be praying for this miracle, so Lord, God, please bless me with your healing powers, with this miracle recovery. The kids and I pray every night for my recovery, and it's just so endearing and loving..even Emma prays for "Mama's cancer to go away" and that she says, "I need my Mamma, God, I'm only 2 years old and to "please help my Mama get better, please God, thank you God" and then she ends it with "Amen."

3 month follow up brain MRI

My 3 month brain MRI is coming up this upcoming Friday, June 8. I'll have to swing in early to get my MRI and then will see my Brain neurosurgeon doctor afterwards to find out the results from my brain Cyberknife radio-therapy that I had back in March.  I'll try to post results when I find out..let's hope for good news. After that, I'll head right into work.  

Kids starting summer school

The kids are keeping busy with their end of school sessions and then will transition right onto their summer sessions after this coming week. Ethan's still in Kumon, gymnastics, swimming and will be attending 1 week of day camp after kindergarten ends and then will enter his 6 week summer class from 9AM-3PM. Ellen will still continue her Mon through Friday morning preschool from 9-12.  As for Emma, she seems really delighted to attend preschool too and so we're still debating about possibly letting her attend Tues & Thurs from 9AM-12PM..but it may be too soon for her...and the girls still have their Sat dance and Sunday swimming classes too. So yup, they're busy for the summer.

On other note, we're glad to be having one of Jason's student help us on a partial volunteer/pay 1:1 tutoring with Ethan and Ellen with their academics.  She'll be starting this coming week. Thanks to Jason for his help, the kids are so excited to be working with her!  

To all my fellow readers, supporters, cancer fighters, thank you for all your support and keep us in your prayers for good news. As Matt, one of my online lung cancer fighter survivor says in all his emails to me, "Find it, Treat it-Live!" Lots of Love.

Fun Day Trip

Yesterday we took the kids to Gilroy Gardens. We bought the special "every one's a kid" season pass since it was a deal and costs almost as much as a day ticket pass with just five bucks more. The kids had a great time. The place is amazingly big and beautiful with lots of kiddie rides for their age group. We only went on a few rides and then by 5PM, we called it a day. It was our first visit there but with our season passes, we'll be sure to come more often throughout the summer. The kids wanted to ride the balloon rides, see a show and even ride the swan lake boat ride, but by 5PM, we were all so tired and it was time to head home to have dinner.
Today we ran some errands and visited my mom. It nice to relax and stay home. I did some house cleaning, clean the entire fridge and got a little organizing done.

Sad news
After the kids went to bed last night, I did a little online reading, catching on my online Lung cancer news and  blog reading. With a heavy heart, I was shocked and saddened to learn of Dr. Norman Wu's as well as one of the Stanford Lung cancer group member's passing. My heart and prayers goes to Dr. Wu's family and Carl's family. Dr. Wu wrote a very hopeful, inspiring detailed blog of his 13 months battling stage 4 lung cancer. Having this disease, you just never know what's coming and it's just disheartening and devastating to hear of another member's loss in this cancer battle. It's just a tragedy more so when it happens to families or to parent's with young kids. So my prayers goes to them and to all of us cancer warrior fighters out there who is battling this terrible disease.

I'll be back to my weekly blood labs and chemo this coming Wednesday and will see my Dr., Dr. Neal. All is well me and the kids. Lots of Love.

Spa Day

Last weekend, two of my very good girlfriends treated me out to a nice Spa day at the Wellness Within in Santa Cruz. It was so nice to be pampered with one of the best, 50 minutes of relaxing therapeutic, aromatherapy massage ever where I wasn't even sore the next few days at all. We started out with relaxing in the spa with our swimsuits and caught up with what's going with our lives, talking and chatting away and then washed up to get our individual massages in separate areas. After our massages, we took a little stroll down a few blocks downtown and had lunch. Embarrassingly, even though they offered to pay, I really had planned on paying for myself, but when Liz picked me up in the morning, in a mad rush out the door, I grabbed the wrong purse and left my keys, phone and wallet at home. Needless to say, I was bummed. Awkwardly, I felt helpless to depend on my friends to cover for me.  Luckily, I was able to make it up and had my husband give me his credit card info over my friend's phone so that I could at least make it up by paying for lunch. Thank goodness for my hubby's help!

And last Wednesday, I did barely qualify for chemo. My white blood count was quite low and I almost didn't get it, but with the rest of my labs good, my doctor, Dr, Neal did approve me to get it. And thank goodness for my good friend, Ramona to drive over to Stanford to meet up with me while I got chemo. What a true angel she is! I just can't thank her enough for her friendship, support and love for always being there for me.

This week's been the usual business with work and kids. I was off from chemo this week and feeling great. I'm looking forward to this long Memorial day weekend with the kids. We don't anything planned yet, but I have a few fun places in mind to take the kids. Too bad my hubby has work all weekend, but we celebrated early with   him BBQing steaks already during his Weds and Thursday when he was off. All is well. Lots of Love.  

Mother's Day

We had a nice Mother's day weekend. After the kids dance/gym and Kumon on Saturday, we did some errands and then celebrated Mother's day with friends at a neighbor's place, who threw a big party. We had a great time eating lots of good food and sang karaoke. Then on Sunday, I was invited to do a speech at my brother's church to talk about and thank everyone for praying for my continued stable health. Everyone at church was so kind and the whole church event was great, with lots of singing and performances to honor all the Moms. We're blessed to have everyone's support and love.

After church, we visited my parents and had lunch. We gave my Mom her red envelope gift as our way of thanks to her for all her home cooking, love and support. All in all we had a terrific weekend.

Work has been even more busier since my manager left to go work for another company. With just the three of us analysts, there's lots to do. But, even with being busy at work, I try to still make some time to do my routine gym workout out. I'm back to chemo tomorrow. Things are pretty busy as usual between family time, kids activities, work and routine housework errands and cleanup. Lots of Love.

Mother's Day Brunch

It's been awhile since I posted here.  With the nice weather and sunlight lasting longer after work, I get so busy with the kids, taking them outdoors in the yard to play for a little bit, riding their bikes, scooters, wagon or a nice stroll around the neighborhood (actually just up and down the block) and then feeding them dinner and then, it's getting them ready for homework and then bed time.  So by the time all of this is done, I'm just tired and ready for bed myself.  On top of that, I've been super busy for the last two weeks with work and then planning the kids summer schedule/day camp/preschool and other such activities. I love it though, hanging out with the kids in the warm weather.

Over the past 2 weeks, we've been spending lots of weekend time hanging with friends either at birthday parties or doing fun day outings to the zoo, having dinner with friends and bowling with the kids.  This past weekend, thanks to Jason and his students, they organized an awesome pre-Mother's Day Brunch event at his local high school for us yesterday. The kids and I had a great time and the event was just fun to see all the talent his high school students put together in honor of Moms. It was put on by the Interact club, which its mission and purpose is to help volunteer within the community. So endless thank yous to Jason, his family and all the students at Piedmont High for an awesome event in my honor. Here are some pics from the event.

I'm just glad to be enjoying life to the fullest and keeping busy with the everyday normalcy.  I'm getting used my Power Port now and it doesn't even bother me much, other than the occasional itch. It makes getting blood draws and chemo infusion so much better and painless (other than the one needle poke into the port). And again, thanks to my wonderful friends, supporters, family and husband, I'm so blessed to have the love and prayers from everyone for my continued stable health. Thank you Liz, Ramona, Kim, Jason and his family for being such a good friends and always being there.  Lots of Love.

CT Results

Here is the latest results of my CT scan from this past Tuesday, 4/17 of my chest, abdomen and pelvis. Overall, the study states that everything is stable, as it states, "STABLE DISEASE WITHOUT SIGNIFICANT INTERVAL CHANGE WHEN COMPARED TO 02/03/12. Yay! This is great news. Since I've been stable for the last 6 months on Gemcitabine chemo, my Dr agreed to do scans at 3 months interval instead of every 2 months. I know it's a little riskier to wait an extra 4 more weeks to do scans, but it's a good baseline to start doing as it's awful to keep getting the toxic contrast and radiation at every 8 weeks. It's a good compromise.

After seeing my doctor, I went upstairs to get chemo and my monthly shot of Xgeva (denosumab),which is a bone strengthening drug to help prevent bone fractures. The nurses used my power port to draw blood labs and also used it for my chemo infusion. I was a little nervous to use it as it's still itchy and feels funny underneath my skin, but it went very easily and smoothly with just a little tiny bee stung poke. It wasn't too bad at all and feels much better than the regular needle stick poke into a vein. For the easiness, it's no wonder many patients like having the power port.  Still though, I don't like having this plastic tube clamping to my neck vein 24/7...but I guess having cancer, this comes with the territory.

Work is getting busier and busier and so I may have to come in a bit earlier, like 7AM so that I can get my routine morning gym workout, shower and get ready for work by 8:30AM. I'm going to try this new schedule this coming week so that I can get the gym workout out of the way and focus on work. I'll be back on Wednesday for lab draws and chemo again this coming week. And another good news is this time, I'll have a good friend accompany me. It's great to have caring friends. Now, hopefully with my routine chemo, I won't have to always come alone all the time as perhaps with 2 friends volunteering to come along with me at least once a month, it won't be so lonely. 

Other than keeping busy with the kids, I've noticed that I get easily tired or run low on energy running around with the kids at places. Ever since I've had the port, my neck feels a little funny and I just can't wait to someday have this removed. I've heard some patients have this power port as long as 8 years! Yikes..that's a long time to wait..but then again, having 8 years onward to look forward to instead of the 2% of lung cancer patient make it past 5 years and beyond is an amazing milestone and a miracle to hope for. The weather's been nice and hot here and we're loving it. Lots of Love.

CT Scan today

I went in today to get a CT scan of my chest, abdomen and pelvis with contrast. The procedure went smoothly. Since my power port is still really new and the stitches has not fully recovered, the nurse didn't want to chance using it yet and so I had to bear the usual needle stick poke pain with the IV into a vein on my right AC line.  I'm not even sure if my new power port will be ready yet to be accessed tomorrow for my routine blood draws and chemo infusion.  It's about a week since I've had this and I'm still not liking this power port as it is still itchy and sore. So far, it's awful having this power port and I'm not so thrilled about having put this in. I'm not sure why every chemo patient whom I've talked to highly recommends it.  Perhaps, after my stitches heal and in a few weeks, I'll get used having this power port underneath my skin and I'll have happy news of relief to report; just like many of the cancer patients who have it.

I'll find out tomorrow the results from today's scan and see if Dr. Neal will decide to change or keep me on the same chemo regimen.  It's hard to tell if the CT study will show stableness or not based on how I'm feeling. Overall, I'm doing everything as normal and feeling alright. But one thing that scares me a bit is that I've been having more frequent "hot" flashes throughout the day sometimes and I'm starting to feel just a tender touch of achy pain in one spot in my back, which I hope isn't another new bone tumor metastasis. Having cancer, every new kind of ache or pain brings about a little more worry and anxiety as I've become more aware of my own body's new changes.
Then again, having this "poison" call chemo infused week after week, endlessly with no end in sight, I can only imagine how much damage its causing to my own good cells and immune system. It's no wonder some cancer patients decide to take a break or stop it briefly and try alternate natural treatments to help rebuild or detox their body.

I'll post an update as soon as I can once find out the latest results. Lots of Love.

2012 LUNGevity Hope Summit, Blogs

I had a terrific weekend with the kids. With the nice sunny weather, we spent every minute having fun. On Saturday, they got creative with painting, attending an art class at Gymboree, visited Grandmas, played at the park and went to an evening party.  The kids also made new friends at one of our neighbor's party, which we stayed a little later past their bedtime again. On Sunday, they had a blast at the Jungle where they climbed throughout all the play structure and then afterwards, since the weather was so nice and warm, we went to the park where we rode the train and the carousel and then played in the playground.  All in the all, the kids just love it when I'm home hanging out with them. Of course, before the fun day starts, I always try to get them all to do a little bit of academic, reading, writing or math work in the morning, especially trying to get Ethan motivated to finish up his Kumon homework. With a little of push and hard work, Ethan's moving along slowly with his math, reading and writing skills. Our weekends are always full with lots of good, family quality time.

Lungevity 2012 Hope Summit

I read about this 2012 LUNGevity Hope Summit at http://events.lungevity.org/site/TR?fr_id=3420&pg=entry while doing my weekly reading about Lung cancer news. It's a pretty cool event. I won't be attending since I have work and young kids and no sitter to watch them overnight. As it states on its website, this summit "is a survivorship conference for lung cancer survivors of all ages and stages of disease, currently in or out of treatment, that will include inspirational speakers, medical expert forums, advocacy forums, lung cancer survivor-specific sessions and opportunities for lung cancer survivors to connect with other survivors and share their stories with the public and media." I'd like to attend it one day but not his year.

Besides the summit, Lungevity also posts some inspirational stories of real life Lung cancer survivors. Some of these survivors tell an amazing story of their miraculous remission of being cancer free after a stage 3 or near death diagnosis. Check it out at Faces of Hope: Kathy Smith , Faces of Hope: Jamie Young  and much more at http://www.youtube.com/user/LUNGevityFoundation/feed?filter=2. I hope I'll be like one of them someday and be cancer free, but with knowing what I have, I don't want to hold onto false hope but it's still awesome to know that there are others out there who have miraculously been "cured" or cancer free. Watching them tell their individual stories, I'm left at awe and wonder on how they were treated so that I can share it with my own Dr to be on the similar treatment regimen.

Lung Cancer Support Group

Besides belonging to the Stanford Lung Cancer support group, I also belong to an online Lung Cancer support group call http://www.inspire.com/, as well as the "Living Room" at  http://www.lungcancerfoundation.org/living-with-lung-cancer/lung-cancer-livng-room/. I haven't attended any of the meetings from the "Living Room" monthly meeting since it's a pretty far drive to San Carlos and it meets  late in the evening on a every THIRD Tuesday of every month from 5:30-7:30pm. But it's launching a live webcast meeting this month and so I will definitely be sure to log in and attend online via live webcast.  Lung cancer is a terrifying, lonely, depressing and sad illness and it's hard to really cope and deal with it on a daily basis and so talking, discussing, and hearing the latest news and coping it with similar people who have it helps.

Other Lung Cancer Blogs I f follow

As I'm still learning all there is to know about my illness, I also follow a few others who have what I have as a way to see and learn how others deal with their treatment and recovery. Some of these Lung Cancer bloggers have exactly have what I have; stage 4 non small cell lung cancer and they all share a unique, inspirational experience. I've listed their blogs that I follow below to help spread the hope that these blogs bring about and have also separated it by blogs who have sadly lost their battle against this devastating disease. All of these blogs and many more which I have not listed, are all well kept; well written and well documented.. So many endless thank yous to all of them all for sharing their experience.  Here they are:

Current Amazing Blogs I follow: 

1. http://outlivinglungcancer.com/, by  Linnea Duff. As she states on her blog, "My purpose in recounting my experiences is two-fold:  to offer hope and to provide a window into the life of someone living with terminal lung cancer.  And I do mean living. "  She's currently a SEVEN year survivor of stage 4 NSC Lung Cancer.

2. http://jimallen-lungcancerhappens.blogspot.com/, by Jim Allen, who shares his 5 year of living with stage 4 lung cancer. He's had whole brain radiation before and now will be going through it again.

3. http://crushmycancer.blogspot.com/, by Norm Wu, a Doctor himself, who at at the age of 40 years old, otherwise a healthy non-smoker, was diagnosed with stage 4 NSC Lung cancer in 2011. With faith and his chemo treatments, his treatments currently have given him a 90% reduction of his tumor masses..Amazing. 

4. http://sk-livingwithlungcancer.blogspot.com/, by Sk, who was diagnosed with stage 4 NSC Lung Cancer on June, 2008. He writes about his own ups and downs with dealing it, both with Chemo and Chinese Herbal medicine.

5. http://www.mikebakereducation.co.uk/beatingcancer/, by Mike Baker, an award-winning journalist, author, broadcaster, and media specialist in the UK, who keeps an uplifting, unique blog on his NSC adenocarcinoma lung cancer treatments. He was diagnosed, April 2011, and is currently rejecting getting anymore CT scans, chemo treatments and is trying an holistic, natural approach to treat his cancer with supplements, raw diet, cutting out glucose, no grains, no cereal, no red meat and no diary products and follows the Budwig diet. He takes about 130 large doses of expensive supplements per day and also does the twice per day coffee anemas.  Amazing...

RIP bloggers of NSC Lung Cancer, their Gift to other NSC Lung Cancer survivors

1.  http://www.themelissawaller.com/tag/lung-cancer/, by Melissa Waller.  A young, non smoker, otherwise healthy, she kept a well documented journey through all her treatments as a stage 4 NSC Lung cancer survivor. A definite courageous, spirited warrior.  

2.  http://www.godincontrol.bravehost.com/, by Emily Wong. Amazing journal of her faith and strength.

3. http://dorothysauber.com/, by Dorothy Sauber, an incredible, talented writer who wrote and published her essays as she courageously battled her stage 4 NSC Lung cancer. Her work is now published for free.

As for me, I'm still trying to get used to my power port as it's still uncomfortable and naggy underneath my skin. I'm doing alright and will get a CT scan this coming Tuesday to see how my current chemo treatment is doing. Send me good thoughts, prayers and strength my way please.  Lots of thank you to all of you for your support.  Lots of Love.