Emily's Lung Cancer Journey

And the results are in . . .

2011-06-14T14:14:00.000-07:00

Great news. The PET/CT scan came back with no sign of cancer! Overall Impression: "No evidence for hypermetabolic recurrent or metastatic neoplasm with post operative changes noted in both the left and right lung." Things can never be too easy though- I need to follow up on a few incidental findings- some GI issues I think related to prolonged use of tarceva. I'm scheduled to see a GI dr to discuss.

Best news we could get. The dr. would like me to spread out my next scan between 3-6 months. We decided on 4 months. I'm still on the every 2 month time period for my brain MRI's. I guess it's a balancing act- trying not to be exposed to too much radiation. I'll take the 4 months though- this time around the PET Scan through me for a loop- it seems they did extra contrast - the dr wanted contrast with the CT as well. Combined with fasting, I was feeling pretty lousy by the time I got home.

Today I was treated to a free hair cut, color and style compliments of Joshua Christopher Salon in Fullerton. One of the bonuses for being a model in the St. Joseph Fashion Show I mentioned earlier. Since my hair fell out from the tarceva- it's slowly grown in thick and curly. It was great to get it cut and styled.

My boys are growing up on me. I'm off to Atlanta in a few days to bring Hunter to his first sleep away camp at Emory University. I can't believe he'll be gone for a month this summer! It seems like he was just born. We attended Willie's "graduation" from preschool last night. One of my short term goals when I was first diagnosed was to be around to watch my youngest go off to kindergarten. We've decided to enroll him in Pre-K at a new school since he's not quite ready for Kindergarten- close enough for me though. Aaron had a great year on the baseball field- making the all star team. I'm so grateful to be here for all of this. :)

2011-06-08T10:44:00.000-07:00

I was recently selected to participate as a model in a fashion show whose aim is to raise money for my local cancer center. After watching the DVD from last year's show (over 1000 people in attendance) I'm not sure what I've gotten myself into. Hunter keeps telling me I'll be fine- just walk like they do on Project Runway. :) It's coming up at the end of June- tonight we have our first rehearsal. I need to put together a 75 word voice over which will run while I'm walking the runway with my "significant support person". How to summarize my emotional and physical two year battle with stage IV lung cancer in 75 words? I want to be thankful and hopeful without sounding cheesy.

Today may not be the best day to come up with something. Like I said in my previous post- I really try and live my life with hope- but there is also something else lurking- fear. I can usually keep this monster hidden in the closet. But this week is SCAN WEEK- try as hard as I can- I can't seem to keep the fear from invading my room.

Two scans down- one big one to go. I had an echo cardiogram last week- results came back normal. Higher up on the anxiety list is the brain MRI which I had yesterday- passed with flying colors. Perfect brain- no sign of cancer. :) But the most fear inducing scan of all- full body PET/CT scan takes place tomorrow. My first "post" surgery scan. There's that fear again- what will it show? How will I handle bad news? good news?

I'm trying so very hard to be hopeful and finding a way to lock fear in the closet and throw away the key. A lot easier said than done.

Back to writing my 75 words- think hope not fear. I must channel my inner Dr. Seuss.

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”

There is always hope

2011-05-31T13:33:00.000-07:00

The results of the mutation testing are in- the lung nodule removed in March has the T790m mutation. No surprise really- but still emotional for me to know my cancer has mutated to a more drug resistant form. More than 50% of patients on tarceva develop this type of mutation. Why does cancer have to be so smart? Since the lung nodule was the only sign of cancer before my surgery- the thought is to stay on tarceva- since it may in fact be working on the "non-mutated" cells. I'm scheduled for a PET/CT scan in early June- in the meantime- continue on tarceva and hope that nothing new appears.

Through this entire journey- the only way I've been able to emotionally deal with the diagnosis is to really hope for the best- hope that the treatment plan I choose would provide me with the most optimal outcome and hope for researchers to discover new drugs effective against tarceva resistance. I really have to take things a few months at a time- from scan to scan- planning ahead to react if the scans show a set back. The goal is to keep getting a benefit from the treatment plan for as long as possible in hopes something new and even better will come along. Not the easiest way to live.

It's been a tough few months for a few people I know- people like me- young with children at home- struggling with lung cancer and progression. When I was first diagnosed- I reached out to those dealing with a similar experience- and others reached out to me- via online groups, blogs, email, facebook. A virtual world of people I've never met personally but feel a connection too. And I have to say- it just sucks when I read about progression. I feel bad for them (and me!) for having to deal with this really s****y disease.

But- with that being said- what else is there to do but hope and research my options and continue to live life? It's really the only way I've learned how to survive.

Last year I meet someone at the National Lung Cancer Partnership Advocacy training who recently wrote a blog post about hope- I'd like to share it with you: Please don't abandon hope

Spring

2011-05-02T12:46:00.000-07:00

We've been experiencing hot windy weather known around here as the santa ana wind's- and I'm loving the heat. It seems like we've had cold, dreary weather for a year now (nothing like the northeastern part of the country I know!)- but I'm extra ready for some sun. Ever since my first lobectomy two years ago- I'm cold all the time. I'll take the 90 degree heat anytime.

Spring is a time of rebirth and renewal- flowers bloom, and all the world seems new again. The boys and I watched a documentary last night on the rejuvenation of life after the Mt. Saint Helens eruption in 1980. Life slowly renewed and replenished itself after the eruption- amazing to watch. Such a metaphor for life and living with cancer. I look forward to spring and the healing that comes with time and a new found fight against the challenges lung cancer brings to my life. I'm slowly recovering from my VATS wedge resection I had in the beginning of March. It's taking longer this time around- I'm frustrated that I don't have the energy I used to have before cancer. BUT- my goal has always been to enjoy life while I can and make the most of the time I have with my family. I've enjoyed the time off work while recovering to spend time with the boys- picking them up from school and being more involved in their day to day routine.

As far as the cancer front goes- it's one day at a time. I'm continuing on tarceva. I haven't received my results yet on the mutation testing- should receive them any day now. The MRI scan of my brain a few weeks ago was perfect- no sign of any new mets- but to be on the safe side my neurosurgeon is recommending scans every two months (I had "graduated" to every four months) since the recurrence in my lung. The next CT scan of my chest will be at the end of this month- I'm very nervous to say the least.

In case you haven't noticed- I decided to change the look of my blog- it's served me well for two years- but I'm in need of a change. I've created a few pages with lung cancer resources including links, etc. I hope you like the new look. :)

Update

2011-03-05T09:14:00.000-08:00

Sorry for the break in posting- I wanted to take a break from blogging for the past six months- sometimes its nice to live life and not have to think about lung cancer. As I approach my two year "anniversary" of being diagnosed- I think back to all my family and I have been through during this time. It's been a journey for sure.

Things have been going well- until lung cancer decided to make a new appearance in my other lung. I went in for surgery a few days ago to have a wedge resection of my lower right lung- a small nodule appeared on my latest scan and I decided to be aggressive as possible and have it removed. The pathology came back as positive for adenocarcinoma- same type as last time.

I'm sending the tissue out for genetic mutation testing. I'll have a better idea what my next steps will be after the testing results come in. Good news is my pet scan shows no other signs of cancer.

My sister created a caring bridge site to update: http://www.caringbridge.org/visit/emilyroberts

I remain hopeful and cautiously optimistic for my future. I will continue to push the limits with treatment and do everything I possibly can to be around for my boys. The hardest thing was not having to go through surgery again- it was having to tell my kids and family about it. I'm so fortunate to have my parents around to help and my mother in law who is flying in soon. I'm also so thankful for my wonderful husband who helps keep life "normal" for the kids.

First Descents

2010-10-03T13:33:00.000-07:00

Me at the top of a 200 foot rappel (above). (below) From the bottom. (thanks Bubbles for the pics!)

I just returned from an incredible experience in Estes Park Colorado rock climbing with other young cancer survivors. We all gathered for a week long camp courtesy of FIRST DESCENTS. It was truly amazing- the conversations with others going through similar experiences as me- we could talk about cancer and treatment and life and really understand each other. The climbing was intense- 3 full days of climbing including a multi-pitch climb on the last day. I loved learning how to "clean" the route- being the last climber up with no one around to coach you on where your next foot hold should be. I really had to think about the next step all on my own. Taking the gear out was fun- I loved hooking the carabiners into my harness- it really made me feel like a bad ass climber. At the beginning of the week we shed our real names for nick names. I became "Mountain Mama" for the week. Soon my new friends Hawk, Bubbles, Fuggs, and Lizzard seemed like old buddies of mine.

There are so many metaphors with cancer and climbing. Pushing yourself to the limit and making it to the top past the hard part of a climb. One day- my group of 4 decided to take on the hardest pitch of the day called "the Needle".

The Needle

I went into the trip with an attitude of really wanting to push myself to the limits and attempt every climb. I stood by while Fuggs made the first attempt. Watching her make it to the top after much persistence was such an awesome feeling. I belayed Bubbles next- who also made it to the top after what seemed like dozens of attempts. She never gave up and watching that gave me courage to try. When it was my turn- I hit a part of the rock with what seemed like no hand or foot holds. I kept telling myself to keep trying- and felt the encouragement and love from down below. My other partners had made it- i HAD to make it too. And somehow- I did. What a feeling- touching the carabiner at the top.

Every one's experiences with cancer is different. Their stories were inspiring to me- men and women who decided to LIVE despite having cancer. One surprising connection I made was with a girl named Lizzard. When everyone first arrived at camp- we informally met each other and talked about the kind of cancer we have. I didn't really expect to meet anyone else with lung cancer- but I did. Lizzard's been fighting close to four years now with stage iv nsclc. She's the exact same age as my little sister. She's amazing- her strength in fighting lung cancer despite all the treatment she's had.

Me and Lizzard at the top of a summit climb in Rocky Mountain National Park

Thank you First Descents- for the friendships I made which are sure to last a lifetime. And providing the opportunity to push myself physically and mentally to reach the top of the rock! It was truly an awesome experience!!!!!

Happy Labor Day

2010-09-06T14:13:00.000-07:00

Nearly 1 million Californians have been out of work for more than half a year. According the California Budget Project, in July 2010, 980,000 Californians -- a number larger than the population of San Francisco -- had been looking for work for more than half a year, up nearly sevenfold from three years ago. I know what this feels like- my husband was one of these unlucky Californians to be out of work for a long time. Having cancer takes something from you- it makes you feel out of control of your life. Being unemployed- no matter how hard you try to find a job- brings about a similar feeling. Combine the two- it’s amazing I haven’t been in a deep pool of depression this past year.

But- this labor day my family has reason to celebrate. Last week my husband received a job offer- for a great company doing a job similar to what he had before! Today’s a day we can celebrate and not have the overwhelming feeling of not knowing what the future holds. Thanks to our amazing family we’ve been able to scrape by- but the feeling of never having enough to provide for your family is horrible- something I hope never to experience again.

So for today- I’m very thankful for my family, my health, and most especially for my husband having a chance to do something he’s good at.

Media Reports on Women, Lung Cancer, and the Never Ending Debate on "Blaming the Victim"

2010-07-22T18:21:00.000-07:00

FIGURE 1 Annual Age-Adjusted Cancer Death Rates* Among Females for Selected Cancers, United States, 1930 to 2006.

In the last few weeks, I've noticed an increase in reporting on lung cancer and women. It's nice to see some press time being spent on this important topic. The reports coincide with the latest American Cancer Society Cancer Statistics report recently released. The report "Cancer Statistics" highlights the drop in cancer death rates for virtually every cancer, EXCEPT lung cancer in women. It should be noted, most media outlets have focused on the positive side of the report- a decrease in cancer related deaths. I wish more would focus on the fact that death rates did drop- BUT NOT FOR ALL CANCERS! A few key statistics from the report regarding Lung Cancer and women:

Lung cancer surpassed breast cancer as the leading cause of cancer death in women in 1987 and is expected to account for 26% of all female cancer deaths in 2010.

Incidence trends decreased for all 4 major cancer sites except for lung cancer in women, in whom rates are still increasing, though at a much slower rate than in previous years.

The New York Times published an article entitled "Blame's Net Catches Lung Cancer Patients" focusing on the discrimination lung cancer patients receive.

Lynn Eldridge's lung cancer blog on About.com highlighted the ACS study in her article "Cancer Deaths Drop- But Not For Lung Cancer in Women".

Katie Couric highlights the problem in this video:
.

Thank you media for highlighting lung cancer- we need to continue to raise awareness and show the world the face of lung cancer.

Cautiously Optimistic

2010-07-11T12:12:00.000-07:00

My consultation with Dr. Janne at Dana Farber in Boston last week couldn't have gone any better. This was my first time actually visiting DFCI and the experience was wonderful. Since it's a teaching hospital, patients not only see the head md, but usually a resident as well. The resident came in the room and recited my history to me from memory based on the medical records I sent before the appointment. He obviously had done his homework. After an hour of asking questions and checking me over, the resident and Dr. Janne spent a good amount of time reviewing my scans and discussing my case. When they came back into the room- the doctor gave us the best news yet- Cautiously Optimistic about my future. Getting rid of the primary tumor with the lobectomy, treating the brain mets with gamma knife, and taking tarceva to get rid of any micrometastisis were all the right things to do in terms of survival. So officially- I'm considered to have NO EVIDENCE OF DISEASE (NED) for the last 15 months. This is as good as it gets with stage iv lung cancer. We discussed cutting down my dosage of tarceva to help with the side effects- I'm dropping to 100 from 150 immediately. Even better news for the future- he mentioned the possibility of STOPPING tarceva altogether at my 2 year anniversary. I'm not sure how I feel about stopping- but even knowing the possibility exists in the future is very exciting. I'll take it one day at a time and not come to any decisions yet. I'm almost hesitant to write this post- I don't want to jinx myself. But I really feel like sharing the news to others and providing some hope for those fighting lung cancer just like me.

One of the nice things about having this blog is the people who reach out to me from all over the world. I had the opportunity to meet up with a guy named Tim whose brother is fighting stage iv lung cancer. We've been corresponding via facebook for a few months now and I learned his brother was at DFCI the same day as me. As Todd and I were going into the building, Tim and his brother were leaving. We literally crossed paths and had the chance to meet in person. It was really nice to talk to him. Such a small world sometimes.

2010-07-08T06:53:00.000-07:00

Sorry the extended absence with posting. I needed to take a break from all things lung cancer for awhile. I enjoyed a wonderful 3 week vacation in Europe with my husband and kids, my parents, and my sister and her family. It was an incredible experience- we didn't want to come home. I'll post pictures soon. We spent 4th of July with Todd's family in Marblehead. His parents are selling his childhood house- so it's a nice opportunity for him to spend sometime here before they move. It nice having another vacation with the kids- hanging out, going to the beach, exploring.

I'm headed to Dana Farber today for a consult. It's been awhile since my last consultation with a lung cancer specialist. I couldn't pass up the opportunity to see someone in Boston while I'm here. My list of questions is a page long- primarily related to the EGFR mutation and acquired resistance. I'm hoping to learn more about potential new drug therapies in the pipeline for patients who develop resistance to tarceva. I'll post again after my visit.

I'm not sure how many people are continuing to read my blog- especially with my lengthy absence. Thank you for your emails- I enjoy reading them. I really value the connections I'm making with complete strangers who are living with lung cancer- young women like me who have found my blog and written to me. It helps to talk with someone going through the same things as me.

I hope everyone is having a terrific summer!

I'll write again soon- I promise.

Journey with my family

2010-05-21T17:10:00.000-07:00

I'm sitting in the airport waiting for our flight to barcelona. The last few weeks have been crazy busy with work and packing for our trip. We're taking a trip of a lifetime- a 10 day disney cruise in the mediteranian. I'm so excited to share such a great trip not only with my kids and husband, but with my sister and her kids, and my parents. Good news on the lung cancer front- my last set of scans continue to show no evidence of disease (ned)! Huge sigh of relief. Sorry for the short post- but its not easy posting via blackberry. Just wanted to let everyone know that I'm doing well and may not post for a few weeks- off enjoying life. :)
Don't forget to check out the asco abstracts released yesterday- this years conference has some interesting info related specifically to egfr mutations, tarceva dosage and more.

If not me, then who?

2010-04-29T09:38:00.000-07:00

I've had a few days to reflect on my experience at the National Lung Cancer Partnership Advocacy Summit. It was a very powerful experience. I meet many courageous people with a similar passion to fight for more research funding for lung cancer. One of the speakers asked for us to raise our hand if we choose lung cancer- of course none of us had- but we are choosing to do something about it. So what did I learn and where do I go from here?

1. Use of social media to raise awareness. I'm going to continue my blog and use it as a way of raising awareness about lung cancer. Hopefully it's a resource someone can turn to and share with a friend or loved one who has been diagnosed with lung cancer. I'm also now on Twitter- following other lung cancer advocates as well as tweeting lung cancer news. If you would like to follow me on twitter- see the lower right column on my blog. It's a great way to share news articles I come across regarding lung cancer. Thank you to other summit participants who frequently tweet for motivating me to start.

2. Research Advocacy. I plan to become involved in research advocacy. Patient advocates have a major influence in areas such as grant review, clinical trial design by providing feedback on concept and protocol development, speaking out about research funding and policy issues. A woman from Research Advocacy Network spoke to us about ways to get involved with research as a patient advocate. I plan on reaching out to various organizations such as the cancer co-ops to try and become involved in peer reviews, etc. I believe sharing my storing and showing the face of lung cancer to those who do research is an important step towards changing attitudes and beliefs about lung cancer.

3. Fundraising. It all comes down to money. Without it- research will not happen. I plan on starting my first steps towards fundraising by participating in the Free to Breath 5 k walk in San Diego on August 21. I will post more info on how you can join me- either by walking with us, helping us fund raise, or donating money.

4. Networking. I'm reaching out to anyone I know who can help me raise awareness for lung cancer. Will you help?

Making a difference one person at a time

2010-04-22T20:11:00.000-07:00

I'm in Tampa, Florida for the National Lung Cancer Partnership Advocacy Summit. I'm overwhelmed with emotion from meeting and hearing every one's story about why they're here. To have over eighty people gathered together with a common purpose of raising awareness and research dollars for lung cancer- AMAZING!!! So what am I hoping to accomplish? I'd like to learn new ways to step up my awareness efforts, including doing more to raise money for lung cancer research in the next year. I'm also here to meet other lung cancer survivors- 24 of us made the journey today- young, old, male, female, from all over the country- including one 7 year stage IV survivor!!!

It's also a great opportunity to have some dialog with specialists in the field of lung cancer. Dinner was filled with interesting conversations with Dr. Jared Weiss from Penn who frequently posts on Dr. West's site. Dessert with a researcher from Dana Farber. Really?! My two favorite sources of lung cancer information in one night!!!!

Over the past year, I've made connections with people across the country who are somehow touched by lung cancer. I've written in a past post about the power of social networking and making connections with people. Tonight I finally met up with one person I met through this blog- great to finally meet you in person Joe.

I can't wait until tomorrow. I plan on posting again soon with everything I've learned to help others take advantage of the resources and information I'm learning this weekend.

Thank you National Lung Cancer Partnership for making this happen- I'm so grateful for the opportunity.

Spring has arrived

2010-04-03T16:20:00.000-07:00

I can't believe it's been one year since my lobectomy to remove the primary lung cancer tumor! The left lower lobe of my lung was removed on April 1, 2009. April Fools Day will never be the same. As mentioned in a previous post- dealing with "anniversaries" at least this first year brings up all sorts of memories. At this time last year, I was so grateful to be surrounded with extended family for months during my surgery and after. We celebrated a terrific Easter last year- with all the cousins hunting for eggs. Lots of family stopping by. There is nothing I like better then having big family celebrations. So I can't help but feel a little sad to not have my aunt, cousins, extended family, Todd's family and especially my sisters around for Easter this year. Thankfully, my parents live close by and will be joining us for our annual hunt and brunch. Celebrating my first holiday after being diagnosed with cancer last year was bittersweet- loving being around family, but not sure if it would be my last Easter with them. I have to say I'm feeling much more optimistic at this point then I was a year ago.

We spent today hiking in the canyons near our house and visiting a nature center complete with snakes, snake skin under microscopes, and everything else boys love to look at. The hills are full of life- lush green landscapes and wildflowers. Spring time California style is in full force- my favorite time of year. We hiked a good couple of miles into the canyon- even jogging together as a family when we spotted our car at the end of the long hike. I'm so grateful I'm feeling healthy and strong enough to do the things I love.

Wishing everyone a happy Easter or belated Passover. To my family who I hold so dear to my heart- I miss you all and can't wait for us to spend many future holiday celebrations together.

Recent Lung Cancer in the Media

2010-03-26T12:27:00.000-07:00

My mother-in-law, who lives near Boston, recently called to tell me about a local news channel highlighting nonsmokers with lung cancer. The report "The Deadliest Enemy (Lung Cancer)" highlights lung cancer in nonsmokers in four videos. I tried to add the video directly to the blog- but no luck. So I'm pasting the link to WCVB Boston's website for everyone to view the videos directly.

"Sara Monopoli felt severe back pain towards the end of her pregnancy. Kevin Brumett thought he'd pulled a calf muscle. In fact, both had lung cancer, a deadly disease that is hard to detect, almost always fatal and kills more Americans than colorectal, breast, pancreatic and prostate cancer combined. Tonight, Heather Unruh reports the alarming facts about this silent killer, one that's affected her own family, and one that increasingly claims the young and non-smokers."

http://www.thebostonchannel.com/chronicle/22868191/detail.html

Lung Cancer Advocacy

2010-03-17T09:50:00.000-07:00

Since my diagnosis of lung cancer a year ago- my goal has been to raise awareness about this terrible disease. I've tried to do this through my blog and local media outlets. I recently learned that both my mom and I were accepted to attend the National Lung Cancer Partnership Advocacy Summit in Tampa, FL. The goal of the Lung Cancer Advocacy Summit is to empower advocates by providing them with training, resources, knowledge and courage to go back to their communities and take action. I'm looking forward to attending the summit- not only to learn how to be a more effective advocate, but to meet others who are committed to the fight for lung cancer awareness.

I believe the availability of blogs, support group websites, even social networking sites such as facebook and twitter have helped me to find not only answers to my questions about lung cancer, but have connected me to other young women like me. One way to help spread awareness is through the use of social networking sites like facebook and twitter. Recently, a face book buddy of mine whose wife has been fighting lung cancer for 18 months wrote a very compelling opinion article in the gainsville sun. Joe Caridi: Not just a "smoker's disease". It is people like Joe who will help change the perception of lung cancer. I learned about the article by reading my newsfeed in facebook- Joe posted the link.

I'm looking forward to the summit and to learning new ways to help bring much needed awareness and attention to the disparity in research spending for lung cancer. It is often difficult and politically sensitive to express the non-smoking versus smoking aspect of lung cancer. Refer to my previous post for my comment on this. I'm aware that some smokers with lung cancer wish that it wasn't differentiated at all. However, I think Joe summarizes it nicely in his article: "It will only be when Americans stops thinking of lung cancer as a disease that smokers deserve will there be true changes in the political will to dedicate the dollars needed for research to cure this horrible disease."

Om shanti shanti shanti

2010-03-03T11:38:00.000-08:00

It's been a busy month- with the kids starting baseball season, work, life. It's also been emotional for me- thinking about this time last year and all the uncertainty of figuring out my diagnosis. I'm so happy to be doing well almost a year later- but at the same time, my life and my family's life changed forever a year ago. Everyday I think about lung cancer- I wish I could get it out of my mind sometimes- but I'm just not there yet. When I was first diagnosed, I had so many different emotions. I went from being really scared to just thinking about surviving. Slowly, I've been getting back to normal life. But this year anniversary thing has thrown me for a loop- I think all those emotions I experienced in the beginning are starting to surface again.

Looking back- the one thing I can say that has helped me physically, spiritually and emotionally get through the diagnosis of lung cancer is my yoga practice. It really gives me a chance to relax, breath, and spend time focusing on healing. Whenever I feel especially upset, I pause and remind myself about inner peace and chant Om shanti shanti shanti- Om peace peace peace. My body is actually stronger now than before cancer. It also helps me stay in tune with my breathing and the health of my lungs. I'm more aware of how I am feeling. My yoga studio is starting a new workshop specifically for cancer patients and survivors this month- I'm excited to meet others going through cancer treatment looking to yoga for healing and support. One organization I found early on which supports cancer patients who are looking for yoga classes near them- is called Yoga Bear. They provide cancer survivors with a connection to a local yoga studio and offer free passes for several months. For those of you wanting to try yoga and are not sure where to start- they are a great resource.

Yoga, an ancient but perfect science, deals with the evolution of humanity. This evolution includes all aspects of one's being, from bodily health to self-realization. Yoga means union - the union of body with consciousness and consciousness with the soul. Yoga cultivates the ways of maintaining a balanced attitude in day-to-day life and endows skill in the performance of one's actions.
~B.K.S. Iyengar, Astadala Yogamala

Can't stop smiling

2010-02-03T17:10:00.000-08:00

Results of my full body Pet/CT scan today were unremarkable- radiology speak for no sign of cancer!!!! In addition- my brain MRI this afternoon showed no evidence of disease. The swelling (edema) I had two months on one of my treated lesions is gone. I think the anxiety leading up to today was the most I've felt since diagnosed with cancer. What a huge relief! I stopped by my favorite dessert spot for a dark chocolate box to celebrate with my family. :)

it's that time again

2010-01-27T08:17:00.000-08:00

Scan anxiety- In the beginning- I would have thought that as time goes by the dread leading up to my scans would lessen. But as I reach my one year anniversary of being diagnosed with stage IV lung cancer- I'm more nervous than ever for my next set of MRI's and Pet/CT scans. Maybe it's the inevitability of tarceva resistance- knowing that at some point in the future the cancer cells be back. I'm so hopeful for a long and fulfilled future- but the scans bring back some of the reality and pessimism of living with cancer.

To make matters worse- my original pet/ct scan date was supposed to be today. However- blue cross decided to deny my authorization. I've had to deal with insurance issues throughout- but a flat out denial for a procedure that will detect any recurrence? Three phone calls and two days later- blue cross reversed their decision and I'm scheduled for this friday instead. Luckily I'm well enough to jump through the insurance hoops (I have a ppo!). But what if I wasn't as I'm sure many people who have stage IV disease are?

The Promise of Designer Drugs for Lung Cancer

2010-01-08T16:52:00.000-08:00

In previous posts, I've described the importance of genetic mutation testing for lung cancer. In my case, my lung cancer is EGFR positive- with the in frame deletion in exon 19. This particle deletion tends to respond very well to TKI's- drugs which are EGFR inhibitors such as tarceva- and patients may live significantly longer than other patients without the mutation.

I've been on tarceva since April of 2009- and so far my pet/ct scans have come back clear. However, the clinical efficacy is limited by the development of drug resistance. No one can say when this resistance will occur- in some cases it may be a year- in other cases longer- but it does happen. A new mutation in drug resistant patients-T790M shows up- this mutation does NOT respond to TKI's (tarceva). Knowing resistance can and does occur- I'm always on the look out for new research findings concerning tarceva resistant tumors.

My dad recently sent me an article about a group at Dana Farber in Boston who recently published new data in a letter to Nature. Very interesting results indeed.

"This type of drug discovery, in which an agent is developed for a specific gene or protein target, and then screened against cancer cells as well as in laboratory models, is rare in academic medicine" says the study's senior author Pasi A. Jnne, MD,PhD, of Dana-Farber and Brigham and Women's Hospital (BWH). "This requires contributions from researchers in multiple disciplines and a coordinated approach to planning experiments and sharing results. That we accomplished this is evidence of the contribution academic medical centers can make to the quest for new cancer treatments."

It seems they've created a new drug which tarceva resistance tumors (T790M mutation)respond to. Cautious optimism is appropriate here- they have NOT studied it in human clinical trials. A phase I trial is currently in the works. But the research from lab rats is quite promising. I eagerly await any new results in this area.

ringing in the new year california style

2010-01-03T16:39:00.001-08:00

Happy New Year! I'd like to wish a happy and healthy 2010 for everyone!!! With 2009 drawing to an end- I really want to thank all the people who helped us out this past year- the love and support of family and friends means so much to us. I've enjoyed meeting new people- who I never would have been in contact with if it wasn't for lung cancer. A friend of my sister's recently emailed me to wish me a new year- she mentioned how although cancer is a terrible thing to experience- it's does give you the gift of knowing how precious each day is no matter how bad you are feeling. It really summarizes how I'm trying to live my life to the fullest. Some days are more difficult than others- but ultimately- I'm so very grateful for the time I have to spend with my family and friends.

In my yoga class this morning, the teacher recited a quote which really resonated with me and my outlook on life:

"There are two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle." -Albert Einstein

We celebrated the end of 2009 in style- somehow I scored a last minute reservation at the Crystal Cove Cottages for a night on the 30th until new years eve day. For those of you who are not from Southern CA- the the crystal cove cottages are historically restored cottages directly on the beach available for rent through the state park system. Usually cottages are reserved seven months in advance and are about as difficult to get as world series tickets. A few days before New Years- I was thinking about doing something with my family to celebrate the end of 2009 ( I have to admit to being more than ready to start a new year). So I decided to see if any cancellations were made- somehow the stars aligned and someone canceled right before I checked and we were able to stay at Beach Pad Cottage #1 for a night. The pictures show the cottage, view from our porch, and view from the inside window. Although it rained the night we were there- we managed to cook out on the patio with friends and family. Terrific company, great food, card games- I can't think of a better way to say goodbye to 2009. My parents joined us for breakfast at the beach the next morning- we sat on the patio overlooking the ocean and toasted the start of a new year.

On January 2- when reservations opened up for July 2010 at the crystal cove cottages- I was able to reserve a cottage for another night. Here's to a happy and healthy new year!!!

Happy Holidays!

2009-12-23T10:57:00.000-08:00

Sorry for the lack of posting recently. With Thanksgiving and the holidays- I've been busy traveling and enjoying time with my family. We flew to Louisville Kentucky to visit my sister over Thanksgiving- which has always been my favorite holiday. Seven kids running around, good cooking by my sister Sarah and her husband Jon, lots of card playing until late at night, and mainly getting to spend time with my sisters and parents- it was a great time all around. We always go around and talk about what we are thankful for- this year in particular- although its been a tough year with the big C, Todd losing his job, my two dogs Neptune and Sage dying- I've never been so thankful to just be alive and feeling well and spending the time with my family. All things considered with having Lung Cancer- I'm doing well- and for this I am extremely thankful.

I have my next pet/ct scan in January. Unfortunately, I had one small piece of bad news with my latest MRI. After having gamma knife to my brain metastasis last April- I go in for followup MRI's every three months. Everything was good until my most recent MRI in December. The good news- no new brain lesions detected- the bad news- one of the treated lesions has grown slightly and now has mild edema (swelling) around it. The doc feels this is most likely due to radiation- but I can't help but worry about recurrence. Nothing to be done at this point but wait until my next MRI to see if it gets better or continues to enlarge. I'm going in two months instead of three this time. Just when you reach cruise control with this cancer thing and treatment- something new surprises you.

I just got back from a wonderful trip to Aruba with my husbands family- his parents and sister, her toddler and husband. Ever since the lobectomy- I'm extra sensitive to cold weather. Going to Aruba was just what the doctor ordered. What can I say? I LOVE WARM WEATHER. White sandy beaches, warm turquoise ocean with no waves, lazy river pool. . . . . when can I go back?! Spending time with my family on vacation- priceless. Okay- before I really get cheesy- I'm signing off. I'll try to update sooner next time.

Dealing with Quality of Life

2009-11-15T13:03:00.000-08:00

I have a love/hate relationship with a tiny white pill. Each night before I go to bed, I take the pill- 150 mg of tarceva. Our hope is that tarceva is keeping the lung cancer from growing or spreading. Once diagnosed as Stage IV- as I have been- a cure is not considered possible. So- the game plan is to stay on tarceva indefinitely- or until the cancer returns. At which point- a new chemotherapy option will be considered. I know this drug is keeping me alive- but not without some consequences. One thing I struggle with is- how do you go about living with the side effects knowing that there is no end in sight? Some days are better than others- and for the most part I consider myself extremely lucky that can I can go about my normal day. I work 30 hours a week. I'm a mother to three wonderful boys. I usually practice yoga 3 days a week. I climb mountains. I volunteer at my son's school in the garden. For the most part I try not to complain- because I really do think overall I'm doing great considering. But the side effects wear on me- my stomach hasn't been the same since I started tarceva over 6 months ago. I get tired pretty easily- by the time I get home from work all I want to do is go to bed. My hair is growing back slightly- but still extremely short. My eyelashes have grown crazy- I need to trim them often. My eyebrows are falling out. My eyes get infected, my scalp gets infected. The skin on my face is always red. The antibiotic helps with the infections and skin issues to certain extent- but it causes other side effects. But- I am alive!!!!

At my most recent visit with my oncologist- we discussed quality of life versus treatment. I would never consider stopping tarceva- but I've reached a point were I'm considering dropping the dosage from 150 to 100 mg. He's worried about the cancer returning and not being able to get any benefit from the tarceva if we go back up to 150. But I'm still considering it- I know others have been successful with lower dosages. He gave me another medicine to combat some of the stomach issues I'm having. If that doesn't work- we'll consider the lower dosage.

For now- I will continue with the 150 mg of tarceva. I have another MRI scan coming up. And another ct/pet in January. And I will continue to make the most out of everyday I have on this earth to spend with my family and friends.

Cancer Research Funding Part 2

2009-11-04T08:13:00.000-08:00

In my last post, I reviewed NCI research spending. Today, I will examine the money allocated for lung cancer research from other Federal Government agencies, including other NIH Institutes and Centers, the Centers for Disease Control and Prevention, and the Department of Defense. I'm starting to notice a trend. Lung cancer funding is severely underfunded- especially proportionate to the number of people in this country who will be diagnosed and die from this disease.

Centers for Disease Control and Prevention: I’m including the PDF file from the CDC of the FY 2008 PRESIDENT'S BUDGET for the CENTERS FOR DISEASE CONTROL AND PREVENTION below. Pulled from this table I’ve listed the amount of money allocated for cancer prevention and control. Lung cancer is not listed, however, money towards tobacco is listed in a separate category. Tobacco funding goes towards prevention- but nothing for control.

(Dollars in Thousands)
Cancer Prevention and Control Total Amount $306,409
 Breast and Cervical Cancer $201,400
 WISEWOMAN - Extramural (non-add$11,559
 WISEWOMAN - Intramural (non-add) $1,498
 WISEWOMAN - Total (non-add) $13,057
 Cancer Registries $47,891
 Colorectal Cancer $14,418
 Comprehensive Cancer $16,867
 National Education Campaign for gynecologic cancer (non-add) $98
 Ovarian Cancer $4,500
 Prostate Cancer $13,870
 Skin Cancer $2,062
 Geraldine Ferraro Cancer Education Program $4,521
 Cancer Survivorship Resource Center $880
Tobacco $104,241

Department of Defense:
The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. The dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors. In previous years, no DOD spending went towards lung cancer. However, in 2009, the Lung Cancer Research Program (LCRP) was started to provide $20 M for the establishment of a tissue bank, and the development of integrated components to identify, treat and manage early curable lung cancer.

2009 DOD Budget for Selected Cancer Research
Lung Cancer: 20 Million
Breast Cancer: $150 million
Ovarian Cancer: 20 Million
Prostate Cancer: 80 Million

Next topic- non-profit organizations.

Centers for Disease Control and Prevention:
FY 2008 Presidents Budget Detail Table

Lung Cancer Awareness Month- NCI Dollars Spent on Cancer Research

2009-11-03T08:35:00.001-08:00

In my last post, I described the lack of rising survival rates in lung cancer. Without much needed money towards research, these numbers will continue to remain stagnant. I decided to do a little digging to see where exactly the money in the United States is being spent on the war against cancer. This is part of what I found out:

This is from a NCI factsheet: The U.S. National Cancer Institute (NCI), part of the National Institutes of Health and the U.S. Department of Health and Human Services, is the Nation’s principal agency for cancer research and coordinates the National Cancer Program. As a Federal Government agency, NCI receives its funds from the U.S. Congress. In recent years, NCI’s budget has been flat, at approximately $4.8 billion per year. Other Federal agencies, state and local governments, voluntary organizations, private institutions, and industry spend substantial amounts of money on cancer-related research.

I will look at funding for other federal agencies in my next post. Let's look at the NCI budget for cancer. The cancer research program coordinated by NCI investigates the causes, prevention, detection, diagnosis, and treatment of cancer through various research projects and clinical trials.

The table below shows NCI spending in FY 2006, 2007, and 2008 for the 10 most common types of cancer in the United States. The cancers are listed in decreasing order of incidence; i.e., from the highest number of new cases each year to the lowest. Source: NCI Office of Budget and Finance (OBF).

Colorectal cancer receives slightly more funding than lung cancer. In 2009, 106,100 people will be diagnosed with colon and rectal cancer. In contrast, 219,440 people will be diagnosed with lung cancer. 192,370 women will be diagnosed with breast cancer, yet will receive more than double the amount of research funding from the United States government.

In 2008, NCI had 1165 total research projects going for Lung Cancer. 234 of them devoted to smoking cessation. So- in reality, the amount of money going towards detection, diagnosis, and treatment is much less than the amount on the table above. I'm all for smoking cessation and prevention- but there needs to be a realization that smoking cessation efforts will not CURE lung cancer- 1 in 5 women diagnosed with lung cancer have never lit a cigarette before. 20,000 to 30,000 never-smokers are diagnosed with lung cancer in the United States each year. As many as half of all lung cancers in the U.S. occur in former smokers. The national lung cancer partnership website has a great faq about this topic: http://www.nationallungcancerpartnership.org/index.cfm?page=faq

I'm not sure how decisions are made in congress for cancer research funding. I do know that I plan on spreading the word and will write to my legislator to let them know that funding should be more evenly allocated. First- I believe funding should be proportionate to the number of people affected by a particular cancer. The next issue is- should funding for diseases that have a higher mortality rate receive additional research dollars?

Women and Lung Cancer

2009-10-23T13:49:00.000-07:00

I discovered another resource on the web for lung cancer information. I follow Dr. West often on twitter and he recently tweeted about a blog post "Look Beneath the Breasts - Lung Cancer in Women Should Turn Heads" written by Lynne Eldridge MD on the blog http://lungcancer.about.com/b/. With all the pink we've seen for breast cancer awareness month- I've been feeling a bit envious of all the terrific marketing and research resources going towards breast cancer. Can you name the color associated with lung cancer? When I was first diagnosed, I had to look it up. It's clear?! Not sure who thought that one up- but pretty ironic since lung cancer seems to be invisible in society. November is Lung Cancer Awareness month and I'm almost positive I won't see clear wrist bands or cleats on the NFL field. What lung cancer needs is a marketing powerhouse like the Susan G. Komen foundation. I was interested in learning if 5 year survival rates have incresed for breat cancer in the last twenty years- to coincide with the increase of awareness, research, and money. I looked up a chart on the National Cancer Institute SEER website- they have a cool tool called faststats where you can search and compare various data. http://seer.cancer.gov/faststats/index.php I made a graph comparing 5 year survival rates for breast cancer versus lung cancer in females. You'll notice the breast cancer shows a steady, but rising uptick in survival rates with lung cancer remaining fairly flat. We need to change this! Starting next week for the month of November and lung cancer awareness month- I'm going to do what I can to raise awareness. With my blog, I plan on highlighting various lung cancer organizations that do exist and ways to get in touch with them if you would like to contribute towards the fight against lung cancer. I'd also like to highlight some of the larger cancer organizations and publish the information I can collect regarding budgeted dollars towards specific cancers. There's been a lot of talk in the lung cancer community about the lack of funding dollars from organizations such as the American Cancer Society. This is becoming a pretty long winded post, so I'm signing off for now.

New PET/CT scans came back clear!!!

2009-10-12T18:09:00.000-07:00

It's been a crazy few weeks with work and the kids, etc. Todd and I were able to get a break away for our 10 year wedding anniversary (time certainly goes fast)thanks to our friend, Josh, who kindly watched the boys for us for two nights. My parents watched them for the final night. Todd and I had such a great time on a 3 night Carnival cruise to Mexico. We had an awesome time- good weather, good food, and some much needed alone time minus the kids. I had my pet scan on the thursday before we left and decided not to get the results until after we came back today. For once- I was able to completely remove the thought of the results the entire weekend. But when we disembarked the ship on Monday- back to reality. Thankfully, the results came back AS SHOWING NO SIGNS OF CANCER!!!! Everything looks the same as my previous scan. So- a little over 6 months after my lobectomy to remove my tumor- I'm feeling pretty good with the PET/CT scan results. There's still the possibility of microtumors lurking in my lymph and blood system just waiting to come back. But for now- the tarceva is doing what it's supposed. Game plan- continue on tarceva indefinitely and watch with scans every three months. I'm off to Sacramento for work today feeling really good about everything.

Goodbye to Neptune

2009-10-01T15:23:00.000-07:00

Today's a sad day for my family. Our dog, Neptune, passed away. Our other dog, Sage, died earlier this year- the house is so quiet without any dogs around. Neptune was my first baby- Todd and I picked him up at the pound in Atlanta in 1997- when he was only a few weeks old. Sage joined the family a year later- also a pound puppy. I have so many fond memories of neptune joining us on family trips to the mountains or to the beach. It's easy to take for granted that a member of your family will always be around- I knew Neptune was getting older- but I really didn't think he would go this quick. We'll miss you Neptune! The pics below are of Neptune in his prime- he loved to jump, swim in the ocean and chase after squirrels in the park.

Blame the Victim Syndrome

2009-09-23T11:35:00.000-07:00

Recently, I was interviewed for an article on non-smoking women with lung cancer for Fitness magazine and an interesting question was asked. The writer wanted to know what I felt was the cause of my lung cancer since I was not a smoker- did I think it was environmental exposure or second hand smoke exposure? This brings up a really good example of the blame the victim syndrome so prevalent with lung cancer. When someone is diagnosed with almost any other type of cancer (breast, ovarian, etc) people don't usually ask- why do you think you got cancer? It's just accepted that for whatever reason (genetic, environmental exposure, hormones, etc) cancer just happened. I don't believe the interviewer meant any harm in the question- rather it's so ingrained in us to believe that lung cancer is something we could have avoided.

I recently read a LA Times article regarding Public Service Announcements (PSAs) and breast cancer. Also mentioned is a lung cancer PSA (this PSA is embedded on my blog). At the conclusion of the article:

"The take-away here? These ads represent a positive cultural change. In her 1978 "Illness as Metaphor," in which she ruminated on her own breast cancer, Susan Sontag argued that in our culture, cancer was subtly regarded as a failure of character. "Passion moves inward," Sontag wrote, "striking and blighting the deepest cellular recesses." If these sexy cancer PSAs do nothing else, they underscore the notion that we've moved beyond blaming the victim."

This may be so of breast cancer, but I still feel we have a long way to go with lung cancer.

In June of this year- my favorite radio station NPR addresses this very topic in a brief report entitled Non-Smokers Suffer Lung Cancer Stigma:

Living my life

2009-09-14T19:04:00.000-07:00

It's been a busy week with the kids going back to school, soccer and baseball practice and work. But I have to say- it feels good to go about my day LIVING LIFE. When I was first diagnosed, I kept thinking about all the firsts I would miss with my kids if wasn't around. First day of kinder, jr high and high school, etc. I'm finally able to deal with the firsts that have popped up and not have to hold back tears. Hunter started his first season of fall ball- we went to the game on Sunday and I felt so much pride when he made an awesome catch at first base. His smile said it all. But most important- I only felt happiness- not any residual sadness about someday not being there for him. Since I can't really change what the future will bring- I can at least impact how I live my life today.

A side note: Sometimes it's hard to explain all the side effects to my little guy who's three. It's difficult to even figure out how to explain certain things to him. This weekend- he pointed to my hair and told me matter of factly- mommy- when are you going to put your hair back- I like your long hair better!

It really isn't about us versus them

2009-09-03T19:55:00.000-07:00

I woke up this morning with an email in my inbox:

“… Like you, I had brain mets and have done rather well, I was diagnosed in November 1999, NED since October 2000. I like your website but sadly, I was terribly disappointed this is geared toward women and non-smokers.
Lung cancer doesn't seem to make such distinctions.”

Wow! It’s never been my intention to create an exclusive resource for only non-smoking women. It upset me to read the letter- I really hope other’s affected by lung cancer don’t feel the same way- but in case others are thinking the same thought- but have been afraid to voice it- I’m posting the response I wrote to the author of this email:

Thanks for writing to me. It’s terrific that you’ve been NED for so many years- what an inspiration to hear about someone with brain mets doing well! I really am truly sorry if I offended you in anyway. Of course lung cancer does not make distinctions. One of the main reasons I started this website was to educate not only patients but medical professionals of this fact. If I hadn’t of listened to my intuition- I would most likely be in a much worse place than I am now. When I first presented with dizziness and fainting- it took over two months to get into a neurologist and have a brain mri. Even when the mri came back with three enhancing lesions highly suspicious for brain metastasis- do you know what my neurologist told me? He said- some people just have lesions in their brain, the way people have moles on their skin. You’re a young, healthy, 34 old sitting in front of me. No way could it be brain mets. His recommendation- wait a year and have my brain rescanned. For me- I choose to get a second opinion. It seemed like too much to risk waiting (although I kept telling myself I hope he’s right). It took another few weeks to get into a new neurologist. The first thing the new neurologist did was a spinal tap that day in the office. He also ordered a stat ct scan of my chest. And unfortunately- the scan came back showing a 3.5 cm lesion on my lung. Before you say- it must be a bad community neurologist- this can’t really happen- well- not only does this neurologist work at a large medical university- he is head of teaching medical students about neurology. So not only did I get misinformation from him, two medical students who were present in the room also did. Why do I tell this story?- to highlight that EVEN MEDICAL PROFESSIONALS BELIEVE ONLY OLDER, SMOKING MEN GET LUNG CANCER. It was not my attention to be exclusive- but I believe it’s important to let everyone in the world know that ANYONE can get lung cancer. I want the next young healthy woman who goes to her doctor to not be brushed off- but to have things like brain lesions taken seriously. One of the main reasons the statistics are so bad with lung cancer is the fact that it is diagnosed so late in the game.

A sad fact that I learned about lung cancer- the resources devoted to research are sadly lacking considering the number of people in this country diagnosed and dying from it. And unfortunately, although I don’t agree with this, there is a feeling that people who smoke knew the danger and should have known better. They were asking for lung cancer. See my post – Lung Cancer in the Media including NO ONE DESERVES LUNG CANCER for my response to this. But if highlighting the fact that lung cancer strikes all people- possibly we could bring about some change in the stigma associated with this horrible disease. And increase funding for much needed research.

As I’m sure you’re aware- lung cancer treatment is becoming highly individualized with new targeted agents based on molecular characteristics. Another goal of my website is to provide information for other patients in my situation what may be the new standard of care. Lung cancer and its treatment should be dictated by patient characteristics. Non smoking women with adenocarcinoma should know and push their doctors to order EGFR testing- because the treatment of patients with the EGFR and KRAS mutations is different than the standard. Recent evidence suggests that in this particular patient population those who do not have the EGFR mutation should consider testing for the EML4-ALK mutation. I believe that lung cancer is a very heterogeneous disease- with heterogeneous treatments. Not a one size fits all treatment. Again- I’m not trying to be exclusive on my website- just highlight the treatment, statistics, and molecular testing that should be the standard practice (and in a lot of cases is not!) for patients like me (non smoking women). My favorite lung cancer website with Dr. West sums it up perfectly in his post on What I really do: Advance Lung Cancer in Never Smokers: http://cancergrace.org/lung/2008/08/25/wird-adv-lcins/

I hope you find the other resources on my website helpful. I have links to medical journals, news stories, and lung cancer resources which are useful to all patients. I am sorry again if I offended you or others with lung cancer- that was NOT my intention!

More good news

2009-09-02T19:51:00.000-07:00

I had my follow-up MRI to the brain today- it's been 5 months since my gamma knife procedure to the three brain mets. Another scan anxiety day. Before the tech started the MRI- the nurse walked in and said "is this the famous Emily Roberts?" I gather someone from the office cut out the article from the OC Register and put it up on the bulletin board. I get a little embarrassed about the attention- but at least the conversation relaxed me before getting stuck in the loud tube for half an hour. It's so nice at the Advanced Technology Pavilion at Hoag- they schedule your visit with the neurosurgeon immediately after the scan so there's no waiting for results. After the scan- I walked directly to the patient room and Dr. Duma walked in and pulled up my scans. ALL THREE OF THE ORIGINAL TUMORS- GONE! AND NOTHING NEW!!!!!! The doc kept saying excellent- excellent news. What a relief. The plan is to wait three more months until the next scan.

GI Jane

2009-08-31T18:51:00.000-07:00

It's taken all day for me to get up the courage and post about my new look. My hair's been falling out gradually for a month now and I finally couldn't take it anymore. So we decided this weekend to have a shaving our head party in the backyard with the boys. Aaron was excited to have his hair shaved with a mo-hawk hairstyle first. The boys helped cut my hair after. You can see in the pictures that Hunter wasn't to happy with my decision. I told him I would much rather take medicine to help with the cancer and makes my hair fall out, than have a full head of hair and not treat the cancer. He's doing better now- but having him get upset made my heart break for my boys- having to deal with a mom who has cancer IS JUST NOT FAIR!!!!! But we deal with the hand we are dealt and so I'm trying hard to focus on the good- So far I've come up with: In the 100 degree weather we are having in socal not having hair isn't necessarily a bad thing. I was early to work this morning- not having to spend time shampooing and doing my hair saved some time. Along this note- think of all the money I'll save on my fancy shampoo I like. Okay- still sucks not having hair- but I'm trying.

OC Register Responses

2009-08-28T21:32:00.000-07:00

Welcome to all the new readers who found me from the recent newspaper articles! What an amazing response I'm getting from readers who found my blog from the OC Register and Daily Pilot. I just love all the random strangers reaching out to me with their own lung cancer survivor stories. One woman wrote to say "my mom was diagnosed with stage 4 lung cancer in 1998 when she was 57 yrs old. She is still around and doing very well almost 12 yrs later"! What an inspiration!

A side note about the article- my oncologist called me after it ran to say he felt like his interview with the reporter was not interpreted in the way he wanted. He wanted to portray a HOPEFUL picture of lung cancer. I know he feels this way- but it was nice to see how concerned he was about how I would interpret his response. We all know the statistics are not in my favor- but I'm trying to be the exception to the rule- I like to think of it as being on the far right end of the statistical tail. More research needs to be done to shift the survival curve for everyone.

I hope the articles highlight Lung Cancer in the news- (see my previous post on Lung Cancer in the media) and raises awareness on the NUMBER ONE cancer killer of both men and woman! We all need to do something to increase funding for such a prevalent and deadly disease.

Good news

2009-08-26T16:00:00.001-07:00

I woke up this morning to a voicemail my oncologist left at 6:30 this morning with the results of my biopsy (what dedication!). NEGATIVE!!!!!!! It appears the lymph node just had some reactive change to it- but no signs of cancer. I feel so relieved! The plan is to stick with Tarceva for the time being. I will get a followup brain mri in mid September and a pet/ct scan in the beginning of oct to keep an eye on everything. I guess that's the life of a cancer patient- trying to live normally between scans. I have to figure out a way not to get too anxious leading up and right after! But for now- I feel such relief knowing the results came back negative.

Just when you think things are getting back to normal ... reality hits

2009-08-21T16:37:00.000-07:00

When a person has stage IV lung cancer- it never really goes away. Lurking in the blood or lymph nodes are micrometastases just waiting to show up. With each scan is a terrible sense of dread- will it show up this time? It's been close to five months since my lobectomy and treatment with tarceva- and I'm now dealing with my first scare. I have a few palpable enlarged lymph nodes in my neck- which show up as enhancing with ill-defined borders on a ct scan. So now it is back to the waiting game- to find out if it really is cancer that has spread to my nodes in my neck- or (fingers crossed) just an infection of some sort. This morning I had a biopsy of the neck to check for cancer cells. It may be a few days before I get the results. It's the waiting for tests, results, etc. I find the most difficult.

I was feeling pretty down as I left the hospital today until I got home and found some friends installing a new sliding glass door for us. The old door was an original from the 1960s and several months ago stopped working. With everything that's been going on- replacing the door was not a feasible thing for us. The outpouring of love and support we've received from the beginning of this journey continues to bring such joy to my heart. Thank you Jeff and Jason from Austin Construction! The door is beautiful.

OC Register Interview

2009-08-20T13:47:00.000-07:00

Last week a reporter from the OC Register (our local paper) interviewed me about my blog and journey with lung cancer. For me, it was an opportunity to tell me story and help raise awareness about lung cancer. I was a little nervous beforehand- but I think it went well. The photographer stopped by today and took a few photos. Now that my hair is falling out (I have a big ole bald spot on the back of my head) I'm self conscious about how to wear my hair. Getting ready for the photo shoot, I tried on several hats and scarves and finally decided to go with the scarf look. I hope the pictures turn out okay! Every time he asked me to have a serious expression, I started cracking up. I felt like a contestant on Next Top Model. I think the story goes online first, and then will be in the paper. I'll post the link when I find out. Thanks Elysse at the OC Register for taking an interest in my story!

Giving back after cancer

2009-08-16T11:28:00.000-07:00

My friend and next door neighbor, Dan McNamee, is running the San Diego half marathon today with the goal of raising $20,000 for the Kyle O'Connell Memorial Scholarship. Dan was diagnosed with testicular cancer in May 2008 and fortunately is doing great now. From the day I was diagnosed with lung cancer, he's helped me get through diagnosis, surgery, and treatment with his words of advice and support. I would love to help support his fundraising efforts in any way I can.

The Kyle O’Connell Memorial Scholarship supports and inspires special students at University of San Diego dedicated to pursuing careers on the front lines of the cancer fight including nursing, marriage and family therapy and the sciences. We never know who cancer will strike next and when. And so it is critical that we support the next generation of cancer treatment and research professionals so we can continue to gain ground in the fight against this deadly disease.

For more information on Dan's fundraising efforts, check out the website: http://www.sandiego.edu/alumni/alumnirelations/danmcnamee/

Please consider supporting this cause. You will impact the life and career of someone special. They, in turn, will go on to impact scores of cancer patients and their loved ones.

Media coverage of lung cancer. - ASCO

2009-08-12T15:36:00.001-07:00

One of the reasons I decided to create my blog is to create a more hopeful message regarding lung cancer. So much of the coverage relating to lung cancer is negative. Not only are lung patients having to deal with a devastating disease, they often feel stigmatized. Regardless if a person smoked or not- NO ONE DESERVES THIS DISEASE! I hope this blog shows that lung cancer survivors do exist and can feel hopeful regarding new research into fighting this deadly disease.
Media coverage of lung cancer. - ASCO

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Tarceva side effects

2009-08-11T16:35:00.000-07:00

I've been on Tarceva for a few months and the side effects keep surprising me. The latest- my hair is falling out. In the front of my head I look like an ad for male baldness with my receding hair line. The worst of it is the shedding- every where I go is a trail of hair. I'm not sure if it will ALL fall out- or just continue to shed massive amounts each day. I sometimes wonder how it's possible I have any hair left! I'm going to get my haircut tomorrow- something shorter and more manageable. I guess only time will tell if it will all come out or not. But the fact that I will be on Tarceva indefinitely makes me hope for some of my hair to remain.

Lung Cancer Resources

2009-08-09T21:17:00.000-07:00

I've been playing around with my blog template the past few days to make it easier to read. On the left I've placed all Lung Cancer related resources that I've found especially useful and informative. The right side is limited to more personal information. One resource which has been especially great these past few months is the GRACE website authored by Dr. Jack West, an oncologist in Seattle. From the website: The mission of the Global Resource for Advancing Cancer Education (GRACE) is to provide expert-mediated information on current and emerging cancer management options in order to empower patients, caregivers, and health professionals to become direct partners in cancer care.
http://cancergrace.org/

It's updated almost daily and provides such relevant, up to date information on Lung Cancer- I'm very grateful to him for providing this resource to patients.

Hiking to Hope Lake and more in Telluride

2009-08-04T19:05:00.000-07:00

From Telluride

Just got back from an awesome vacation with my family. We drove to Telluride, CO from Tustin, CA, stopping in four corners on the way. We stayed with friends in Colorado who we haven't seen in a long time- thanks for everything Trey and Megan- it was great hanging out with you! What could be a better trip for three boys than fishing, hiking, gondola rides, waterfalls, and swimming in the river surrounded by the most spectular scenery anywhere?! The most challenging and rewarding part of the trip was hiking the Hope Lake Trail- DISTANCE: 3.5 miles to lake- 7 miles total ELEVATION GAIN: 1150 feet up to Hope Lake at close to 12000 feet elevation. What a physical challenge! At the top I kept thinking Emily 1 - Lung Cancer O!

As if exploring Telluride wasn't enough, we ended the trip meeting up with my Uncle Chris for a two day rafting and camping trip on the Colorado River.

From Telluride

Celebrating my birthday at the Magic Kingdom

2009-07-17T15:44:00.000-07:00

I turned 35 yesterday and had one of the best birthdays ever. All day it felt like one of those mastercard commercials. Riding on Small World with Willie and sharing a first roller coaster ride (Thunder Mountain) with Hunter and Aaron- priceless. I feel so fortunate that I'm feeling well enough to spend time with my kids- in fact we almost made it up for the fireworks after spending an entire hot July day walking around Disney.

I've been back at work for the past few weeks. It's pretty tiring working again- but I've been able to modify my schedule so I won't overdue it too much. Todd's still looking for work. It seems like every position he applies for has hundreds of well qualified applicants. I'm not at the point where I can forget about having Lung Cancer each and every day- but at least there are moments (sometimes long!) when it doesn't enter my mind.

Enjoying the good news

2009-07-02T10:32:00.000-07:00

Todd and I went to see Eric Clapton and Steve Winwood at the hollywood bowl on Tuesday night with some friends. Thanks Josh and Kira- we had a terrific time. It was so nice to get out and think about things other than cancer. Looking forward to a neighborhood block party for 4th of July- one of my favorite holidays.

Awesome News

2009-06-30T15:09:00.000-07:00

I received the results of my PET CT scan today. No evidence of disease!!!! Or in radiology lingo- unremarkable PET/CT scan. Liver, adrenal glands, spleen, kidneys, bones, pancreas, and lymph nodes are normal. No recurrent tumor identified. Considering the PET scan before my surgery lit up like a christmas tree- I'm feeling pretty good about the results. Todd and I are off to the Hollywood Bowl tonight to hang out with friends and celebrate. I will continue to have scans frequently to monitor my disease, but at least right now we can feel good about everything I've done so far in terms of treatment decisions.

Happy 3rd Birthday Will

2009-06-28T20:43:00.000-07:00

My baby boy turned 3 years old today. He had an awesome time playing at the beach with his cousins- so much fun in fact he had to take a little rest on his daddy. Will LOVED his special gluten, dairy, egg free chocolate cupcake. He's been looking forward to it for days! It's been such a relaxing weekend with the boys- it's nice not to think about cancer and jobs and just concentrate on spending time together having fun. I have my follow up Pet/Ct scan in the morning. I didn't even think about it once today. I'll be relieved when it's over.

Joining the 11.5% unemployed in CA

2009-06-23T19:17:00.000-07:00

Somehow I believed that nothing else could possibly go wrong in my life now that I've been diagnosed with cancer (not just cancer- but stage IV lung cancer!). But bad news continues to follow my family. My husband, Todd, received a phone call yesterday from his company letting him know that due to restructuring, his employment with the company was being terminated effective today. So- Todd finds himself among the increasingly high percentage of unemployed workers in California. If anyone knows of a district manager position in the wine industry let us know. I've really tried to stay as positive as possible through this entire journey with cancer- and focus on all the good things that have happened since my diagnosis (its good that I have the EGFR mutation, the brain mets were pretty little and responded, etc). It's funny how one's perspective changes on what constitutes good news. Ever the optimist, with this latest news, I'm trying to see what is good in this situation. I'm grateful for my employment with the Orange County Department of Education (OCDE). Luckily, they have short term disability which I've been on since my diagnosis. I've been able to keep my health insurance as an employee. I'm also feeling well enough to go back to work soon. For these things I'm grateful. But I have to admit the past 24 hours have tested my optimism.

Chemotherapy dilemma

2009-06-23T19:02:00.000-07:00

It's been awhile since my last post. The last month has been a whirlwind with end of the school year activities. My husband, Todd, developed viral meningitis and was feeling pretty lousy for the last few weeks. In terms of my treatment, the chemotherapy prescribed was denied by the insurance company. So- I've had to reconsider the chemo option and figure out the best way to fight it. Honestly, I've been so overwhelmed with taking care of the kids and Todd I've been too mentally exhausted to think about it. The reason given for the denial is that the chemo combination prescribed, although approved for lung cancer, has not been approved in combination with tarceva. Basically- either chemo or tarceva- one or the other not both. Since we know that tarceva is the best chance I have- I don't want to jeopardize the insurance deciding not to pay for it (without insurance tarceva is $4000/month). Good news though is that I am feeling stronger everyday. I even feel well enough for yoga class a few days a week. My sister is in town with her 4 girls- they're staying the summer. We're very excited to spend time with them!

Gamma Knife Followup- Good News

2009-06-05T19:46:00.000-07:00

I had my follow-up brain MRI this week. Two of the three lesions are completely gone! The third and final lesion is shrinking and should be gone by the next scan. AND NO SIGN OF NEW LESIONS! The doc was very pleased- the gamma knife procedure worked as planned. Still waiting on the chemo authorization- I called my oncologist today to get an update- turns out the insurance decided to have the authorization go through their medical review process first. I should know by Monday. So- even though my expert lung oncologist is recommending the treatment, AND the treatment is an approved therapy for first line lung cancer treatment- the insurance company can possibly deny it because I'm on tarceva.

ASCO Lung Cancer Update

2009-05-31T13:19:00.001-07:00

Some interesting new clinical trial data was released today at ASCO. Check out Bruce E. Johnson, M.D., director of the Dana-Farber Harvard Medical Center Lung Cancer Program, discussing pemetrexed (Alimta)one of the agents my oncologist is recommending for my treatment.

Visit to Cedars

2009-05-26T14:33:00.000-07:00

Todd and I went to see THE lung cancer oncologist at Cedars in LA on Thursday. The meeting was so hopeful and positive. He kept talking about how great it is that my tumor tested EGFR positive. He also went on and on about the results of the genetic mutation testing showing the specific exon 19 mutation information. He wanted to know where we had the testing done- since it's not information that is readily available. We are so fortunate to have friends with the capability to do such testing- thanks again Paul, Chris and Trey! Based on the exon 19 mutation, the Dr. advised that we add chemotherapy to the tarceva. In his opinion, adding Carboplatin/Alimta every 3 weeks for 4 cycles to the tarceva is beneficial. We are waiting on insurance approval right now to see if adding the chemotherapy is even a possibility. It drives me crazy that decisions have to be made based on insurance approval rather than on expert opinions. If all goes according to plan, it looks like I'll start chemo early next week. I'll keep everyone updated as soon as I learn more.

Wanted- Write to Oprah about Lung Cancer

2009-05-22T10:07:00.001-07:00

The Bonnie J Addario Lung Cancer Foundation has kicked off a letter writing campaign to Oprah to help raise awareness of lung cancer. Check out the link for a sample letter and links to Oprah's email website. http://www.lungcancerfoundation.org/2009/05/19/dear-oprah/#more-1173
Please write to Oprah and ask her to make Lung Cancer matter and feature Lung Cancer on her show next season!

I get by with a little help from my friends

2009-05-18T19:09:00.000-07:00

A friend of mine stopped by today to drop off a gift. A group of people pitched in to buy a juicer- I can't wait to make my first energizing, cancer fighting, nausea blasting juice! Thank you so much everyone- it's a perfect gift. Throughout this whole experience I've been struck by the kindness and support from friends, family, acquaintances, even strangers! I love every dinner or small gift or card- and emails people send with well wishes. I know it's sappy- but it really does make the cancer fight so much easier.

The nausea is getting better and the rash worse. I'm scheduled to see THE lung cancer oncologist at Cedars Sinai on Thursday to go over my current treatment. We're going to discuss adding chemotherapy to the tarceva possibly in the next few weeks. I'd like to hear the benefits, drawbacks, etc to this approach. In the end- i want to be as AGGRESSIVE as possible- and if this means adding the chemo- I can handle that. Research on tarceva as first line is relatively new- the medical community is still trying to understand the best way to give it (alone, in combo with chem, in combo with another targeted agent) etc.

Every year the super bowl of oncology conferences takes place at ASCO. The abstracts for the conference were released last week and I've been reading everything related to lung cancer. The abstracts present new clinical trial evidence not yet published. If you need to learn more about a particular cancer and the latest in treatment- searching the abstracts is a great source of information. Check out the link http://www.abstract.asco.org/

Look good . . . feel better?!

2009-05-13T16:24:00.000-07:00

I had a wonderful mothers day at the beach with my family on Sunday. It took a few days to recover, but well worth the energy. On Monday, I attended a free program sponsored by the American Cancer Society called, Look good...feel better at Hoag Hospital (a local hospital). The morning didn't start out well- I had to pull over on the way to throw up my breakfast, but once I made it to Hoag and my anti-nausea medicine kicked in, I felt much better. It was my first time since my diagnosis that I have been in a room with other women who also have cancer. ACS provided a goody bag filled with make-up and we spent the two hours learning how to apply it. At the end we talked wigs and scarfs and learned how to make creative wraps with tshirts. Walking out I would say my tarceva face didn't look half bad with the new chanel foundation applied. Just the experience of being with other women was uplifting. If you or anyone you know has been diagnosed with cancer, I recommend checking out the website to learn more about this free program.

My in-laws went back to boston yesterday after a nice visit. I'm sad to see them go. Let's hope tomorrow the oncologist can do something about the nausea.

Mothers Day

2009-05-09T15:55:00.000-07:00

I'm looking forward to spending mothers day with the kids tomorrow. I keep trying to remember to live life and enjoy each day I have with my family- and try not to let the magnitude of my illness put too much of a damper on things. So tomorrow- I'll go to the beach with my kids and open their cards and just enjoy the time spent together without any sadness. I may hold them a little tighter than I did last year- but I have to believe we'll spend another mothers day together next year.

I started on tarceva a little over two weeks ago and so far it hasn't been too horrible. I'm experiencing the usual side effects- mostly nausea and the dreaded rash. I still feel a little self conscious going out in public with my tarceva face- but I think the antibiotic the doctor prescribed is helping. And considering the alternative (chemo)- at least I'm able to function and keep my hair! So- the plan is to stay on tarceva and most likely add another targeted agent, avastin in the next few weeks. In a month I'll go in for a CT scan to see if there is any evidence of disease and see how effective the tarceva is.

I've been researching and researching trying to do everything in my power to improve my odds of long term survival. I've been thinking a lot about the holistic approach to treatment as a complement to the standard medical care I'm receiving. I found a great book the other day called Anti-Cancer, A New Way of Life, by David Servan-Schreiber. I highly recommend it. My plan is to incorporate healthy eating and living with the most current treatment possible. I'll continue to keep current on data from clinical trials and lung cancer research. I think for my next post I list some of the websites, etc. I've been looking at for information.

Happy Mother's Day to all the moms reading this and enjoy each and every moment with your children tomorrow!

Emily

Reduce your family's risk of lung cancer- learn about risks from Radon

2009-04-29T13:04:00.000-07:00

When I was first diagnosed with lung cancer, I started to question how it was possible for a non smoker to get lung cancer at such an early age. I soon discovered RADON is the leading cause of lung cancer deaths among nonsmokers in America and claims the lives of about 20,000 Americans each year. Todd immediately bought a radon home detection kit. Fortunately, our house level came back normal. I'm still trying to figure out the lung cancer, but at least I know our home is safe to live in. A girlfriend of my recently had her home tested and found radon levels equivalent of smoking 3/4 pack a day. Radon is a cancer-causing natural radioactive gas that you can’t see, smell or taste. Its presence in your home can pose a danger to your family's health. To learn more about radon check out the EPA website:

http://www.epa.gov/radon/

New Following widget added to my blog

2009-04-23T10:53:00.000-07:00

I added a new blogspot feature on the bottom of my page called Followers. If you enjoy reading my blog- I encourage you to sign up as a follower.

Thanks,
Emily

New York Times Article on Lung Cancer

2009-04-23T10:40:00.000-07:00

I've had a few friends send me the NY times article which was published today. I thought I would post some of the links below. Great information- I'm so happy the NY times decided to write the article and raise awareness about lung cancer.

http://health.nytimes.com/ref/health/healthguide/esn-lungcancer-expert.html

http://well.blogs.nytimes.com/2009/04/22/voices-of-lung-cancer/

EGFR mutation and treatment plan

2009-04-23T10:17:00.000-07:00

Some good news to report! We received word from our friends in South Africa who extracted the DNA from the tissue that the tumor sample has a heterozygous deletion in exon 19 of EGFR. So- based on this, my first-line treatment WILL NOT BE CHEMO! The doctor is starting me on 150 mg of tarceva- a daily pill. The biggest side effect is a rash. I will continue on tarceva and possibly add avastin (another targeted agent) in a month once the brain lesions have healed. Based on the IPASS trial results, doctors are now prescribing gefitinib (iressa) or erlotinib (tarceva)as first line therapy instead of chemotherapy. See the link below for a presentation on the IPASS data:
http://www.esmo.org/fileadmin/media/presentations/977/2123/3_Tony%20Mok_2008%2009%2010%20IPASS%20ESMO%20press%20conference_v3.ppt.pdf

According to the grace website: We now have evidence that the exon 19 deletion mutations tend to be associated with a higher chance of responding to the TKIs (such as Tarceva), and that patients with these mutations may live significantly longer than patients with the L858R mutations. This is probably due to differences in how well the TKIs are able to inhibit EGFR signaling in the two types of mutant EGFR proteins. In conclusion, EGFR mutations are not all created equal and do not all have the same significance. The ones we care about as indicators for using drugs like Tarceva are the deletion 19 mutations and exon 21 point mutations (i.e. L858R).

Check out the Grace website for a great explanation on EGFR mutations demystified:

http://cancergrace.org/lung/2009/03/20/np-egfr-muts-demystified/

Gamma Knife Procedure

2009-04-23T10:09:00.000-07:00

On Tuesday, I underwent the gamma knife procedure to "zap" three lesions in my brain. It really wasn't too bad- they put me under for ten minutes while they screwed the headpiece on. I was awake for the rest of the time. No surprises on the MRI- sometimes new lesions pop up before the procedure- but thankfully only the lesions we knew about were there. The morning after I was able to walk 25 minutes on the treadmill at my physical therapy session. The only real side effect I'm having so far is swelling of my eyes from the screws bleeding internally a little bit. I will continue to have follow-up scans to make sure no new lesions grow. I know it's a little hannibal lecterish- but see below for the picture of me with my head frame.

Lung Cancer Awareness

2009-04-19T15:32:00.000-07:00

After researching lung cancer, I soon learned that the face of lung cancer is not what you think: According to the Lung Cancer Alliance, 50% of new cases are former smokers, many who quit decades ago, another 10 - 15% have never smoked. Unfortunately, I also learned that lung cancer is the HIGHEST cause of cancer deaths causing more deaths than breast, prostate, colon and liver cancers combined. More than twice as many women die from lung cancer than from breast cancer. The overall 5-year survival rate for lung cancer is still only 15% while the 5-year survival rate for breast cancer is 90%, for prostate cancer 99% and for colon cancer 66%. Despite these statistics, lung cancer is the least funded of these cancers.

So- after reading these statistics- I started getting MAD. What can I do? Try and raise awareness. The more publicly involved and visible lung cancer is, the more we can shift a public attitude of blaming people with lung cancer to one of encouraging compassion for them. In California, the State Cancer Plan contains only four objectives for lung cancer, three of which relate to tobacco control. The fourth objective—“To double the percentage of lung cancers diagnosed at Stage 1A by 2010”—has not been acted on and bills encouraging early detection have NOT been supported by the Governor, his administration or a majority of the state legislature.

We need to increase federal and state research funding for lung cancer prevention, detection and treatment! Compared with other cancers and diseases that cause far fewer deaths each year, lung cancer research is woefully underfunded by the federal government. Let’s stop the deaths. In 2008 162,000 mothers, fathers, brothers, sisters, husbands, wives, aunts, uncles and friends will die of lung cancer including about 25,000 who never smoked, roughly 2/3 of which are women.

Please help me get the story out and increase the public’s knowledge of lung cancer, its public health impact and reverse decades of stigma and neglect for the number one cause of cancer death among men and women in California.

Sad to say goodbye to my sisters

2009-04-18T12:34:00.000-07:00

My little sister, Sarah, left today for Nashville. My older sister, Elizabeth, left last week. It's too quiet around the house without them. I'm not sure how I would have gotten through the last month without their support. It was wonderful to have them visit and I can't wait to see them again soon!

Gamma Knife Surgery

2009-04-15T13:33:00.000-07:00

So- the next step is to take care of the brain lesions. I haven't had any real symptoms recently, but it's important to take care of them before they have a chance to grow. I'm scheduled for Gamma Knife to the brain. My sister, Sarah, and I went to the pre-op appt and watched a powerpoint presentation on what to expect. It seems like the most uncomfortable part of the procedure is to have the head frame put in place with four screws to the skull. It's an outpatient procedure. Here's the link to the website that explains the procedure:

http://www.cduma.com/gkr_ov.html

Gina Lee Photo Shot

2009-04-15T13:26:00.000-07:00

I know this sounds morbid- but one of the first things I thought of when I received my diagnosis was that I didn't have any pictures of me with the kids. I'm the photographer in the family, thus most of the pictures we have of the family don't include myself. So- I put my sister, Sarah, in charge of finding a great photographer to take some family photos. One of those things I've always wanted to do, but never could find enough time, money, etc. to do it. We had a great time during the photo shoot with Gina Lee. Now comes the hard part- choosing which pictures we should purchase. Thanks Gina for the wonderful pictures! ginaleephoto.com

VATS Lobectomy

2009-04-15T13:25:00.000-07:00

My VATS lobectomy was exactly two weeks ago today. I feel pretty good considering a surgeon removed the entire lower lobe of my lung. It's amazing the technology available today- in the past the operation would have involved opening up the ribcage to remove the tumor. I met with the surgeon a few days ago- he removed my bandages and cleared me for gamma knife surgery and chemotherapy. The pathology report says the margins were clear, however, the lymph nodes were positive. I'm now considered stage IV- because of the brain metastasis and lymph nodes. At least the tumor is now removed from my lung and any potential problems from having a tumor in my chest are eliminated at least for the present time.

The beginning

2009-04-15T13:20:00.000-07:00

A little more than a month ago on March 16 I was diagnosed with lung cancer. I'm still in shock- how does a 34 year old, vegetarian, non-smoker, get lung cancer?

My journey…

In December 2008, I passed out. My husband, Todd, found me unconscious on the floor. We didn’t really think much of it since everyone else in the family was getting over the stomach flu. A few days later I went to see my primary care physician just to be on the safe side. She referred me to a neurologist. It took over a month to get an appointment. I began to experience more frequent headaches. In January, I saw the neurologist for the passing out episode in December. He felt I may have experienced a seizure and ordered a sleep deprived EEG and MRI scan. Unfortunately, it took several more weeks to get the doctors office to call for insurance approval and to get scheduled before the tests could be done.

In February, the MRI scan came back showing two small lesions in my brain. When I had a follow up with the neurologist, he felt the lesions were nothing to worry about. He said- “Look at you, you’re young and healthy and there is no possibility that the lesions are brain metastasis”. He also said it’s common to have spots on the brain- like the way people have freckles on their skin. He recommended a repeat MRI in one year and a more extensive EEG to determine if I was having seizures. I kept saying- but what is it? And how can we be sure it’s not something really bad like a brain tumor?

In the end, I couldn’t accept what the neurologist said and I went for a second opinion. Thankfully, I was put in touch with a neurologist at Loma Linda who took it very seriously. He ordered a CAT scan of my chest. I received a phone call from the neurologist with the bad news. The scan revealed a 3 cm tumor on my left lower lobe. I had to have a biopsy to know for sure- but the radiologist thought it was highly suspicious. I had the lung biopsy.

I was diagnosed with adenocarcinoma of the lung, Non Small Cell Lung Cancer (NSCLC). The hardest part of this whole process is the waiting. The time it takes for pathology reports, scheduling, insurance approvals, etc.

I know the prognosis for Stage IV NSCLC is not great. But I’m determined to fight this thing with everything I have. Fortunately, I have a great team of doctors who feel the same way. I’m seeking the most aggressive treatment possible. I cherish each and every day spent with my family and friends. I need to have hope- I have three little boys who need me.