Chemo this past week, Novocure

Like every week, since I'm working full time, I hardly have time to write or update my blog on a more routine basis since when I get home, I'm busy with the kids.  But, here is a recap of what's been going on with me this past week.  With a week off from chemo last week, I was back to my Gemzar chemo infusion this past Wednesday. I worked a half day and then drove with my good friend Ramona to my chemo appointment. It was really nice to catch up with Ramona again as it's been awhile since we caught up. She told me about all the things she's been involved with and her exciting New York trip. For me, having her friendship and support has mean the world to me. I'm so grateful for our friendship.

With labs good, I did qualify to get my chemo treatment. This time though, I did get more tired on the second day after treatment.  It could be that lately with the kids sleeping alot later then normal, I haven't had enough sleep and with last weekend, being out late from attending 2 back to back Birthday parties, this added more to my exhaustion.

Novocure
Before I head off to chemo this Wednesday, I did print out some reading material from http://www.novocure.com/ for my Dr, Dr. Neal to read. For those of you with Lung Cancer and or brain cancer, check out the http://www.novocure.com/ site and read about its amazing cancer treatment using development of tumor treating fields (TTF) therapy.  Its site talks about its unqiue TTF therapy as a "new weapon for patients and physicians in the battle against cancer.  "TTF therapy is a novel anti-mitotic treatment that has been shown to slow or reverse tumor progression by inducing cell death in certain solid tumors." I discovered it while listening to a podcast on itunes called TedTalks.  You can see the video or listen to it at http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html.  With his company Novocure, Bill Doyle works to bring breakthrough medical technologies to doctors and patients treating cancer.  Its a novel, effective approach with minimal side effects in giving cancer patients quality of life and remission. Novocure already completed phase 2 controlled study on Non Small Cell Lung Cancer which it publishes on its site and is currently prepping a phase 3 trial in the US to run concurrently with chemo. So keep an eye out for it as I am.  Like my doctor, I'm try always to be on guard to read and educate myself on the latest non small cell lung cancer treatments.

I'll be back to chemo infusion again this coming Wednesday, April 4. Then, since my veins are harder and harder to find, I'll be scheduled to get a port in the following week after. Some of the infusion nurses have been suggesting me to get it to prevent me from the needless agony of being poked every week.

Worry thoughts
Lately, it's been harder and harder to not worry and think about my illness. Since having lost 1 of our cats, Hope so suddenly, the subject of dead, dying and uncertainty looms like a dark cloud over me. The sudden loss hits close to home and I try as much as I can to live as normal and be grateful for everyday. I know it was probably the hardest recommended decision for me to make and probably best for the cat, it still hurts that I couldn't give it life.  Grief, now I know, takes lots of time to help cope and overcome.

Other than keeping busy with work and getting treatment at Stanford, the kids keep us busy. And thanks to my sweet hubby, with alot of hard work and sweat, our front and back yard garden is coming along beautifully! He's already planted bulbs, flowers and vegetables in both our front and back yard garden.  I can't wait to see everything in full bloom.  Lots of Love.

So Sad Our cat Hope is gone

Tonight has been such a sad, whirlwind of events that happened so quickly and suddenly to our "stray" cat, named Hope that we have been caring for the last 1-2 months. As I came home today, I saw our Hope, crying in pain, and lying flat near the door, unable to move her hind legs. I pet her, talked to her and told her to hang on and that I'll get her help right away.  Well, with my nanny rushing out the door, I was left with 3 kids, 2 dogs and 2 stray cats (which have "landed" on our front doorsteps whom we now help care for and feed), 1 of them is Hope who needed help and I had to quickly come up with a plan to get everyone and Hope taken care of. Long story short, I was able to call a friend who recommended a great emergency pet hospital and got my husband to rush home so that I can care for Hope.

Here are some pictures of Hope and some history of him. Hope suddenly appeared at our front yard about 2 months ago, crying out "meow" as if he was lost, looking for his home and owner. As a cat and animal lover, I had to help this poor cat. So within days after see him cry our meow, I called out to him and he came up to me right away and wanted to me pet, rubbed and give him lots of love. We fell in love with Hope and just sort of adopted him as one of our own beloved pet.

Well, when I rushed to Hope to the emergency  pet hospital tonight, I thought, ok, hopefully, the vet will treat him and get him to start walking again and out of pain.  To my shock, the vet gave me the worst news.  Hope had a devastating, life threatening diagnosis. Feline arterial thromboembolic disease or major heart disease. He had major blood clots in his hind legs where he wasn't getting any blood circulating and that was why his hind legs were cold to the touch and his nails were pale in color.  His prognosis survival was poor even if I decided to give him treatment, Heperin, IV Fluids and hospital care. She recommended putting him to sleep because even with expensive hospital treatment, he may not survive she stated. I stepped out and made a few calls to my good "cat" friend expert and my husband and then cried. How could this be happening? Hope seemed so healthy and fine this morning. Then, suddenly, boom, by the end of day, he was dying and I had to make the decision to help him "die" pain free.  He was only 4-5 years old, neutered, micro chipped and just the best, super, friendliest cat ever.  Life, as you you know ended for Hope. I had to quickly agree with the vet to help him be pain free. With painful tears, I held Hope as he died in my arms. How tragic. How helpless Hope was.

As I drove home, I was at a lost. Life is so precious and can quickly change unexpectedly. I miss Hope. And I can help but think what I could have done different to help prevented this. I'm in shock and grieving for the loss of our beloved cat, Hope. Rest in peace. It's been another super busy week.  Lots of Love. 

Nice Weekend, 3/19/12

I had a nice weekend with the kids. They resumed their regular Saturday dance or gym lessons and loved it. Ethan also continued his Kumon class as well afterwards and he's doing really well with it. On Sunday, they enjoyed hanging with me and had a just a blast shopping at Ikea to get some art and organizing supplies. I got Emma her the red egg chair, Ellen her art easel and Ethan some collapsing toy bins to store all the toys as well as a few colorful kid chairs. They really had a terrific time, shopping, playing and walking throughout the store.  Gym Workout Now that work is settling down, I just started resuming my gym workout again. I did about 1.7 miles on the treadmill today, walking along on it at a steady pace. It was nice. My goal is to try to keep doing it daily and as routinely as possible. I really want to start looking fit. Besides the gym, when the weather is nice, the kids and I also try to do a good walk with the dogs.  Spring Planning Spring is around the corner and there's a few things we're still deciding on and wanting to do. I'm still debating about whether or not to send Ethan off to a Spring break day camp or not.  There's one called Einstein Science day camp that I think he might enjoy. We'll see. Of course he can always stay at home with my nanny but he'll probably get bored watching TV and being a couch potato. At his age, I try to offer him opportunities to learn, have fun and stimulate his mind and creativity. I've already also signed him up for his Summer Day camp. Other than planning out the kids activities, I'm hoping to get a little gardening done, like planting out more vegetables and redoing some flowers in our front yard garden.  But, with my time limited, I may just have to buy the flowers and veggies first and leave the planting to my hubby or gardener. Lots of Love.

Low Potassium, ROS1 Rearrangemant

Just before I received my chemo infusion this past Wednesday, lab results from blood drawn an hour before indicated that I was a little low on potassium and that my blood pressure was a lower than my normal too (110/50).  Not sure what's causing this, but perhaps it's due to the radiotheraphy I had last week?  My potassium was 2.75 and the normal is 3.6  And so, to help me get back to the normal levels, I was given 2 potassium pills to take and was told to eat some more bananas. From a  MayoClinic site, "Low potassium (hypokalemia) refers to a lower than normal level of potassium in your bloodstream. Potassium is a chemical (electrolyte) that is critical to the proper functioning of nerve and muscles cells, particularly heart muscle cells. Normally, your blood potassium level is 3.6 to 5.2 millimoles per liter (mmol/L). A very low potassium level (less than 2.5 mmol/L) can be life-threatening and requires urgent medical attention."

So I've been trying to eating a little bit more bananas and drinking orange juice to help regain my potassium balance back.  I'm feeling good though and work isn't stressful at all.  However, throughout the past week, I do feel just a bit of ache here and there in my head where I had the Cyberknife radiotheraphy last week. I hope it's nothing serious and due to the tumors"swelling" and dying off. 

ROS1
On another note, recently this past month, my oncologist, Dr. Neal discussed with me about this new genetic rearrangement discovery called Ros1 that has shown remarkable response in 1 single patient study to crizotinib (a pill form) treatment for lung cancer.  ROS1 represents 1 to 2 percent of non-small-cell lung cancers (NSCLC) and many patients with ROS1-positive tumors tend to be younger, never to have smoked, Asian and to have a type of lung cancer called adenocarcinoma (which fits my profile)   He has already sent my tumor to some lab to get it tested to see if I have this ROS1 genetic mutation.

So far, Dr. Neal has already sent my tumor off to get tested for dozen or so known genetic mutations and as I mentioned in previous posts, all results indicated that I don't fit any of the mutations. Bad luck that I don't any known DNA mutation as some patients have responded very well to certain treatments if the tumor mutations fit to what's been studied. This Ros1 is a new one and so far, I'm still awaiting the results. You can read more about the amazing response rate that this one patient had with taking this crizotinib pill since he had this Ros1 mutation at http://www.sciencedaily.com/releases/2012/01/120131122500.htm. But, then again, it's been about a 1.5 months so far and I haven't heard anything from Dr. Neal about this Ros1.  Hmm, it's highly unlikely I have this Ros1, but who knows, I hope I do.  Lots of Love.

Chemo today 3.14.12

I'm here today at Stanford to get my Gemzar chemo infusion. Got lucky as I got poke once this time, but it's using the same big vein on my right arm. I'm seriously going to think about getting a port put in as I've heard it's the way to go. All my veins are going bad and now I only have 1-2 good veins left.

Donate directly by PayPal
Noice the "DONATE" button I just put in on the right hand side? Well, if you can, or would like to donate, please do. Anything helps towards ongoing medical bills, treatments, copays. etc.  The GoFundMe at http://www.gofundme.com/FawnLee&aff=GFMse works too but it does automatically deduct a 5% fee from each donation, which adds up. Wouldn't it be great where I am seriously cancer free or NED - No Evidence of Disease and I wouldn't need to worry about ongoing, endless medical bills and future care of my kids? That would be the dream.

Legacy Letters
I'm been thinking and trying to find time to write my legacy letters to my kids. I started the process and wrote about 2 letters so far but I have to have to fit it more often.  Sick or not, there are lots of Moms and Dads who routinely take out the time to do this and it's just a wonderful gift for the kids. So this is one more weekly goal I have to do.  Feel free to email me any suggestions, advice and comments on what to write.

This weekend, the kids are back to their regularly scheduled tap/ballet dance or gym lessons on Saturdays. And if I have time, I'm hoping to squeeze in a trip to to a local store to get some art, kiddie furniture and organizing supplies to organize and tidy up the kids playroom and study art area. Gotta head to chemo now. Lots of Love.

Busy Birthday weekend

Whew, we had a very busy weekend hosting my daughter, Ellen's 4 years old princess Birthday party on Sat at the house. It was our first big party for her where we rented a nice BIG combo castle slide jumper with her favorite Little Mermaid theme. She were her pink princess crown and was dressed up in one of her favorite princess costume dresses. It was nice to see our family and friends.  But, since I was busy with managing the food, guests, presents, entertainment (cake cutting, pinata time) and kids, I didn't get a chance to chat with everyone in more longer conversations. I must say it was sort of a crazy, busy day and it flew by so fast, I didn't even get a chance to take any pictures. And of course, with a few of our guests staying until past midnight, and with clean up afterwards, I was beyond tired on Sunday.
Overall, I'm glad the kids had fun and Ellen enjoyed her Birthday party. Next time though, I think we're going to take it easy and go the easier route of having one of the kids party at another kid friendly venue place. That way, the clean up and entertainment, it's all done by that location. That's probably the best way to go and we're going to have to seriously consider this next time.

As for me, I doing good.  Now that I'm working, I'm trying to see how I can fit in a daily workout routine. It's hard though as I'm just always so busy either working and busy with the kids.  I'm hoping when things settle down with the team at work that perhaps I can squeeze in a workout routine at the gym during lunch time.

This week, I'll be back with getting chemo again on Wednesdays. Lots of Love.

Last Cyberknife Radiotheraphy Session

After heading to work for a half day, around noonish I headed off to Oconnor hospital to pick up a CD of the radiation images that I had received from last year so that they can be viewed and studied by my current radiation oncologist, Iris (Dr Gibbs).  Since today was my last Cyberknife radiation treatment, Iris wanted to see if the dull bone hip pain I've been nagging about was radiated on last year and to see what she can do to help alleviate it.

It turns out that the spot I've been complaining about was already treated by Oconnor's radiation therapy team.  But, she states that based on the latest Feb 3, 2012 CT scan of my chest, abdomen and pelvis, she doesn't exactly see what is causing my naggy pain and at this point, doesn't recommend doing any Cyberknife radiation on it for now. We had a nice discussion about reevaluating this later and or keeping a careful eye on it.  I'm beginning to warm up to her and I think she's gotten to know me and understand my case more delicately and diligently now. But, too bad, just my luck, just as our patient doctor relationship begins to blossom a bit, it's already quickly ending since she's taking a 6 months sabbatical leave starting next week.

Last Cyberknife treatment 
Today's Cyberknife procedure went fairly smoothly. The whole treatment took 1 hour and 10 minutes. I didn't really feel any pain, discomfort or any throbbing shooting radiating beams zapping my head at all. Strange as it sounds, it was pretty pleasantly surprised. The technician said that it's probably due to it targeting different spots..hmm, maybe yesterday's zapping was as the higher, intensity level and today's was lighter. Oh well. I'm just glad it's all over and done with. I'll be getting brain MRIs now every 3 months for the year. Let's hope this is the beginning of the end of my brain mets and it continues to stay stable forever.

Next week, it's back to chemo again. And guess what, since I took a steroid, Decadron yesterday to prevent swelling of the tumors from the Cyberknife radiotherapy, I didn't go to bed until almost 3AM! I tried to fall asleep earlier, even with tired eyes and body, I was wired with energy due to the steroid pill. Next thing I know, I had to get up by 7AM and get ready for work.  With 4 hours of sleep, I felt more tired than usual. I tried resisting taking the steroid again today but was advised and convinced to take it, to prevent any brain swelling since I again got the Cyberknfe radiotherapy.  I guess, it'll be another late night sleep again...my poor eyes and brain, it's been through alot and I crave for a good night''s long nice of restful sleep.  Lots of Love.

One Cyberknife Session Done

Today, I completed my first round of Cyberknife radiotherapy. Before getting it though, I had to wait to meet with Dr. G, the radiotherapy oncologist to discuss the results of my scans and treatment plan.
So based on this past Monday, 3/5/12 thinner sliced or more magnified MRI and CT scans, she did find 3 more tiny tumor spots, which brings it now to like 8 or so I think (hmm, I'm not sure now, since she said it was 7 at first, then 3 more today, which equals 10, which is new to me). She then stated that since it was less than 10 spots total, she agreed to proceed with the Cyberknife treatment instead of the whole brain radiation procedure. Yay! What a relief. 
After this discussion, my Cyberknife treatment started. The process started out with me laying on a similar looking CT machine, and my super tight masky mold was put on my face and fastened very securely down to keep my head and face from moving. Then, to keep my body warm, a warm blanket was put on my body as well as another anti radiation safety protective gear cover was layered upon it. Then it the Cyberknife procedure started for one dreadful hour.  I was told that it would be painless and the beams wouldn't bother me much.  But, mind you, I felt every harsh beam of radiation hitting my head. It was awful. As soon as it started, I felt my head throb and swell up, like having a bad headache. Worse yet, the hard surface my head was lying on was so flat and so uncomfortable. Thank goodness I agreed to take a steroid, Decadron, to prevent the swelling or else it would have been worse. But, somehow, once it was over, as soon as I sat up, my head didn't hurt anymore. Perhaps it was the whole process of lying on a hard surface, being unable to move and having to lay still in a frozen like state and locked into place with the mask that made it all the more claustrophobic and terrible.

Well, I'm glad it's done for today and I just one have one more session tomorrow to go. Whew, I can't wait it until it's over. After the Cyberknife procedure, I walked myself out, grabbed a little bit to eat from their cafeteria, and then drove myself into the office for work. And, yes, the Doctors did say it was safe for me to drive afterwards, although it would have been nicer if I had a friend, family member or caring buddy come with me.  Seems like I'm the only one who comes for treatment alone..oh well. That's my hard cancer life routine now.  Since I got into work late, I felt obligated to stay at work later and didn't leave until 6:30 PM.  Ooooih, what a long day..lots of Love.  Fawn

Got Scans, MRI done

Today I got up early for my CT and MRI scans appointment at Stanford. My alarm was set to beep around 6:30AM but I got up a little earlier like 5:30AM and then, as soon I layed back down to get some more zzzs, I had to get back up again to get ready and get going before the morning rush hour traffic.  I got there just in time and once again, got painfully poked with a big IV needle. Yuck. It even got more yucky when the technician shot up through IV, this thick, yucky matellic taste of contrast.  Then, I was wrapped up with flour like dough on my face so that they can make a masky, netty mold of my head to prepare for my upcoming Cyberknife radiation procedure this week.  I felt like a wrapped up mummy with the white dough covering my entire face and head.  This doughy masked stayed on my head the entire time I was lying on the donut CT scan machine for about 15-20 minutes.

Aaugh, while going through this procedure, I was thinking and realizing to myself that this yuckiness, these contrast CT and MRI scans, these constant IV poke routines every single week, it's endless. I should get used to these procedures by now, but, really, I'm not and just plain don't like it. I wish I can just rub on an oil lamp Genie and I'm granted back my healthy self. Some cancer patients are lucky, even faced with late stage 4 cancer, after a few rounds or a year's worth of treatments and scans, they are pronounced cancer free. Wouldn't that be great if I'm all done with all the treatments by now and to be cancer free for life. That would be the ultimate dream. But, with the dire diagnosis of what I have, since there's no known cure, it won't be happening. Still, I'll keep up wishing for it and quietly dreaming of it in my hearts.

Back to my scans, well, after the CT scan, I walked on over to the main hospital to be on stand by for the brain MRI. More yucky contrast again.  Good thing this time, this brain MRI was fast and brief. After 10 minutes of loud knocking sounds, it was over.  By now, it was about 10AM and then, I had to drive myself into work for the rest of the day. By 5 PM, I called it a day and left on home.  I don't know the results of these scans until this Wednesday when I meet with the radiologists to get the Cyberknife radiotheraphy done.

Other than this, I've been busily planning and taking the kids with me this past weekend to prepare for Ellen's upcoming big 4 years old princess/Little Mermaid Birthday party. They were a big help and wanted to be apart of every detail.  With 3 kids in toe, they all came with me to select out Ellen's custom ordered castle princess/little Mermaid cake, pinata and even picked out the type of character jumpers they should have online as well as party favors wrapped with ribbons. They're all excited to see their friends, cousins and family to come celebrate her Birthday. Lots of Love.

Cyberknife Radiotheraphy

I'm so glad it's Friday and I'm back at home.  Having worked all week and having had chemo just 2 days ago, I'm tired, exhausted, and just want to head straight to bed. But, I still have the responsibility of taking care of the kids.  In the evenings, after work and with my nanny leaving to go home, my next shift of work begins, feeding the kids dinner, changing diapers, doing homework with them and getting them for bedtime since my hubby is at work.  Even towards the end of the day, my kids though, they have an unbelievable amount of energy. 
This week has been a long week of work. Now that I've been working for 3 weeks now, my fondness towards the newness of work has slowly faded. The long hours, the deadlines, the crunch, craziness of punching away at work, analyzing numbers and reports is coming back to me. At times, I struggle towards having conflicting thoughts in my mind and heart, cradling the question of whether being at work is the best use of my time since we all don't know how much time I really do have considering the seriousness of my illness. But then again, so far, I'm handling it well and work does fulfill me with a sense of needed diversion and has given me a sense of "normalness" again.  I'll just take one day and one week at a time for now.

Cyberknife
 I finally got the call about my schedule for Cyberknife radiotheraphy for the 5 tumor spots in my brain.  It's all set to go for 2 treatments next week pending that the scan on next Monday doesn't show anymore spots or else the doctors would change the course of treatment to full brain radiation.  I'll post an update after the scans.  Lots of Love.